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I've been looking for some other CP/IP (Chronic/Intractable Pain) patients who would like to contribute to this site, whether one time, sporadic, or regularly. If anyone is interested, please email me at IntractablePainKills@gmail.com

I'm also open to any suggestions about improving the blog.



Saturday, December 28, 2013


I felt bad for not updating much lately, so here we go. My doctor increased my clonidine patch to two clonidine 0.3mg/day patches (0.6mg/day). In short, it made me sleepy for two days, and extremely weak for a week. I'm recovering now, but I'm worried because my legs still hurt. On a positive note, it is helping with other symptoms, like my headaches.

Christmas was hard, but I'm surviving. I'm praying that Santa was a little late with my Christmas wish,  a pain doctor willing to manage my pain. Maybe, my future PM doctor is waiting for New Years and their New Years revolution to help more Medicare & Medicaid pain patients.

I wish everyone a happy, pain-free New Year


P.S. Got a Canon EOS Rebel T3 digital SLR for Christmas. I haven't had a chance to play with it because it was just delivered yesterday thanks to FedEx taking THREE WEEKS to deliver it. I'm so excited! Remember, hobbies are great distraction techniques.

Wednesday, December 25, 2013

New Harvard paper slams FDA, says agency 'cannot be trusted'

New Harvard paper slams FDA, says agency 'cannot be trusted'

This link was posted on a support group and I started to reply, but that turned into a rant, which sent off-topic. Essentially, it's about the problems with the FDA, and the system as a whole specifically as it relates to pain management, opiophobia, the epidemic of undertreated pain, and how money in medicine is a conflict of interest.

Sorry for the length, but, like I said, it just spilled onto the page. Yes, this has hurt me directly, but it's really hurt me the most indirectly. I've had to sit idly by as my wife, friends, and fellow support group CP/IP sufferers suffer needlessly from crippling diseases including EDS, Fibromyalgia, CFIDS/CFS/ME, IP, cancer pain, lupus, MCTD (mixed connective tissue disease), various autoimmune diseases, CPS (Central Pain Syndrome), Rheumatoid Arthritis, RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) and so much more.

This is emotional and disorganized, for that I apologize (I'm too sleep deprived to correct it).

I've known that we can't trust the FDA since Lyrica and Cymbalta were approved for pain. Yeah, they help some people, but they're statistically irrelevant. That, and their constant denials of efficacious drugs like Xyrem/sodium oxybate for Fibromyalgia (the Fibromyalgia formulation wouldn't be called Xyrem) and several pain medications despite superior evidence than many other approved drugs.  I'll eat my hat if they ever approved Sativex.

The DEA is in charge of diversion, the FDA is not supposed to deny drugs because of abuse potential, but they do it all the time.

Don't get me started on the untested abuse deterrent OxyContin, Opana ER, etcetera.

Plus, they don't make any generic manufacturer test the extended release mechanism on anything but the lowest dose, the test are statistical estimates. The worst part is that the FDA approved monographs parade these estimates as trial results.

The problem is our system, profit is put ahead of people and that's why we all suffer. If FDA approval was based on efficacy and adverse reactions, medicine was about helping patients, and not the almighty dollar, cannabis, Sativex, sodium oxybate for FM, 90 day sufentanil implants, diacetylmorphine/diamorphine, ibogaine, countless other medications would be readily available, and many, many other medications would never have been approved. Actiq would be available for any patient that can't get relief from pills, not just well insured cancer patients (although even we cancer patients can't get prescriptions anymore because writing opioids prescriptions isn't cost effective for doctors because of poor reimbursement and excessive paperwork).

Kids sbouldn't be given $20/pill (over $60,000/yr) antipsychotics for insomnia (melatonin, zolpidem, benzodiazepines, barbiturates, Rozerem, all more effective, safer, and cheaper), behavioral issues (discipline), autism, Asperger's Syndrome (TALK to your children and work with them, you can overcome it without toxic antipsychotics, and in many cases, no drugs at all; insomnia must be treated, but many respond to melatonin).

The FDA is owned by the drug companies, their profits, not our best interests are at heart.

Occasionally, Opiophobia or similar irrational fears of abuse overcome profits, but it's extremely rare. Usually, it's profits.

Ibogaine is more effective that methadone or buprenorphine, but out only requires one treatment and can't be patented.

Methadone is $10-15/month, but it can only be used to treat addicts in expensive, inconvenient clinics. They could allow doctors to prescribe it for addiction like they do for pain management, but that's not in Suboxone's best interests. Sparse methadone clinics, daily visits, high costs, limited hours, and overall inconvenience push people from methadone to Suboxone. Many of my friends with CP/IP have faked addiction to get methadone and/or to get buprenorphine (never at the same time) when their states effectively banned effective pain management, I've researched this for many friends in Florida, Texas, Washington, Oregon, and several other opiophobic states.

AVERAGE monthly costs (excluding initial methadone/Suboxone intake fees; $150-300+)
methadone Rx $10-15
Methadone clinic $60*-600
30 day Suboxone $600-900
*$60 are state funded clinics and not really average

Legalized Cannabis is a drug company's worst nightmare, effective, safe, and NATURAL (no patent). Not only that, but people can GROW IT THEMSELVES, no need for drug companies at all. Even generics make them big money.

Methadone is a great pain drug, but terriers prescriber education. Also, when used for pain management, it only lasts 6-8 hours. They could make a once daily version, but the drug is so cheap that insurance companies aren't going to pay 20-50x more for methadone ER and drug companies aren't going to sell methadone ER for anywhere near its current price
*~Breakthrough Med Pricing~*
135 methadone 10 mg (45mg/day)<$12 (cash), ~$6 (Medicare D)
180 oxycodone 30mg (30mg 6x/day) ~$300 (cash), ~$75 (Medicaid rate)
1080 oxymorphone 10mg (20mg 6x/day) ~$11,000/90 day (cash), ~$6000/month (Medicare)
270 oxymorphone 10mg (15mg 6/day) ~$3000/month (cash), ~$1600 (Medicare)
Is it surprising that OxyContin and Opana ER are pushed by drug companies? Those are GENERIC prices. Why bother with ER methadone, especially when it's exclusivity would be much more limited than OxyContin.

*Wholesale prices per pill*
Oxymorphone 10mg $5.65
Opana 5mg $3.60
Opana 10mg $6.53
Oxymorphone ER 5mg $1.74
Oxymorphone ER 40mg $11.13
Opana ER 5mg $2.39
Opana ER 40mg $15.31

Oxycodone 30mg $0.36-1.45
OxyContin 30mg $6.93
OxyContin 80mg $16.33

Morphine 30mg $0.23
Kadian 30mg $6.37
Kadian 200mg $43.01
Avinza (morphine) 30mg  $5.77
Avinza (morphine) 120mg $19.89
MSContin 30mg $4.04
MSContin 200mg $21.39
Morphine Sulfate ER 30mg $0.82-1.70
Morphine sulfate ER 200mg $3.95-8.99

Methadone 5mg $0.0852-0.0868
Methadone 10mg $0.1410-0.1920
Methadone 40mg solutab $0.2976-0.3316 (methadone clinics only)
Dolophine 10mg $0.2026
Methadose 40mg solutab $0.3300

Fentora 0.6mg $82.24

Methadone ER isn't going to happen in our system.

Prialt/ziconotide intrathecal (cone snail neurotoxin) was only approved to discourage abuse proof intrathecal morphine. They actually put a neurotoxin closer to your spine than an epidural. It causes psychosis and death in way too many patients, including several of my friends.

Actiq was $1-2/dose and extremely effective, but the opiophobic FDA refused to approve it for over 20 indications. They shut the company up by going from moderate to severe BTP (breakthrough pain) to the incredibly narrow severe breakthrough cancer pain. This indication got it to the market and physician's wrote prescriptions off-label for desperate patients who had tried everything else. Unfortunately, the prove started to rise. Eventually, the price got high enough to cancer insurance companies to require prior authorization and limit coverage to cancer patients, effectively banning off-label use. This caused further prove increases. GENERIC OTFC (Oral Transmucosal Fentanyl Citrate) is now $20-80/lozenge and patients are limited to four lozenges (2 flares per day). My prescription was $60/dose, $240/day, $7200/month, & $21,600/90 day Rx. Thankfully covered by Medicare (they negotiated ~$6,000/month ~18,000/90 day Rx). Unfortunately, the FDA furthered the EPIDEMIC of undertreatment and underprescribing of opioids by instituting an extremely overzealous class-wide REMS on TIRF (transmucosal immediate release fentanyl; Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral). This seems like just Opiophobia, but there is also a financial motive. While it would seem that restricting such an extensive drug would be detrimental,  a second generic manufacturer finally broke the duopoly, which would have allowed competition if demand hadn't been decimated. Also, despite fentanyl lozenges being extremely high profit thanks to fentanyl citrate being DIRT cheap, even more money can be made with interventional pain management, antipsychotics, antidepressants, anti-epileptic mood stabilizers, and overpriced NSAIDs, like the cox2 inhibitor, Celebrex.

I can take an effective dose of opioids, or I can get less relief and more side effects by taking a conservative dose of opioids plus OVER a DOZEN non-opioids.

Last, but not least, the lack of FDA approved treatment for CFIDS, despite clear evidence that Rituxan/rituximab and Ampligen are both effective. Unfortunately, they're expensive, very expensive. Antidepressants are cheap and so many people believe the CDC propaganda. CFIDS research funding has been frozen for 20 years. In order for it to have kept up with inflation alone, it should have doubled.

The US clinical trials for CFS/ME are less conclusive than they should be because the FDA requires the use of there CDC CFS criteria instead of the more specific ME criteria and too many misdiagnosed patients end up trials. The FDA uses this as an excuse to block approval. If you exclude the patients that don't resound at all, the drugs are miraculous for the remaining patients.

The real reason that that hasn't been approved is two-fold.
1) it treats CFIDS as a physical illness
2) Ampligen is owned by a tiny Philadelphia biopharma company, Hemispherx. They don't have the money to have have the FDA in their pockets and aren't rich enough to get away with bribery

Posted 12/25/2013 08:57:00 AM
Edited March 16, 2014 7:42 am
Edited March 16, 2014 6:05 pm

Saturday, December 7, 2013

Clonidine patch

I received my first box of clonidine patches today. I opened the box to find 4 clonidine 0.3mg/24hr patches and 4 foam overlays (personally, I prefer occlusive dressings, but these work alright).

I placed roughly a third of a patch out of an abundance of caution and in seven days, I'll use the roughly 2/3 patch, then go to full patches.

When I started the pills, I had very little side effects, but I'm experiencing significantly more sedation than previously. Despite a reasonable amount of familiarity with this chemical, I'm a little freaked out.

Wish me luck...

Note: on clonidine for neuropathy & headaches

Friday, December 6, 2013


Unfortunately, I didn't feel up to updating you guys after my appointment, but better late than never.

As always, my doctor was kind and logical (even more so that I expected) while, unfortunately, medically impotent.

I informed him that the oxymorphone was effective for the minor flares, but that my around the clock pain is still out of control. I didn't even ask for a increase in Duragesic, I knew that I wasn't going to get it, so I purposefully dismissed the possibility. Instead, I asked for an increase in clonidine and a switch to the patches (1mg pill only lasts me 4 hours each). Since I reported the lack of side effects and my blood pressure was still high enough, my doctor put me on 0.3mg/day clonidine patch, but I highly doubt that it will work at that dose. However, I can't say for sure because haven't tried our yet(pharmacy had to order it and now I'm waiting for ride to pick it up).

I informed him that a recent urine test of mine was positive for THC & 0.48ng/ml hydromorphone. However, my test was false negative for lorazepam, dextroamphetamine/Dexedrine (Like Adderall), and oxymorphone (among others). I had also informed him that my wife tested negative for everything, despite being on oxycodone, oxymorphone, fentanyl, alprazolam, Adderall, and several others. I semi-frantically attempted to explain that I was baffled as to how it was possible that hydromorphone was in my urine and explained my theories and why they're unlikely.

The first thing that he asked me was whether or not they did confirmatory testing (a strong sign of a good doctor), but I informed him that the original test was GC/MS (standard confirmatory testing method), although I'm unsure if it was ever run a second time.

He was at least somewhat concerned about the negative testing given our ample doses of several of those medications.

He was also amazed that the lab didn't know that Marinol (synthetic THC) causes a positive test for THC, even under GC/MS. They apparently don't know the difference between Marinol/dronabinol and "spice", aka K2.

I was extremely worried about my doctor's reaction to the above information because he isn't very comfortable with my need for high doses. I was also worried because he is also a Suboxone doctor and seeing multiple addicts every day tends to skew your point of view, but our PCP acted sanely, rationally, and even respectfully.

I had also informed him that I switched from ranitidine/Zantac to Tagamet/cimetidine a while back and needed a prescription for that so that my insurance would cover it and I could stop purchasing it OTC. Unfortunately, it is a strong CYP450 3A4 inhibitor which would boost the efficacy of several medications that I'm on by slowing the metabolism. Despite informing him that I've been safely taking cimetidine/Tagamet for months and months, he wasn't comfortable prescribing it, so I'm going to try famotidine/Pepcid, again.

Despite the lack of opioids and trying a failed drug, again, the appointment went better than I had expected and I was reasonably satisfied.

As a checked out at the front desk, I asked to talk to the head of Managed Care (referrals department), if she wasn't busy. Thankfully, she want and I was able to handle a lot of things and gain some piece of mind. Unfortunately, she informed me that I'm out of options for pain management and she's unable to try again without risking the office's relationship with this offices (they get blacklisted).

You may be asking why I am writing all of this, after all this is an everyday appointment. While these little appointments may seem insignificant, they are the threads that make up the fabric of pain management and living with pain care.

While on a mini-rant of frustration, she (head of managed care, who I've known since childhood) attempted to defend our PCP for his inadequate treatment regiment by reminding me that he puts his medical license at risk and he's already pushing it with what he's prescribing now. Of course, I already know this and understand it all too well, but it is well worth remembering that it takes a very strong person to stand up even to the extend that or physician has and their livelihoods are at risk by helping us. The medical establishment as a whole needs to fight this so that doctors are not required choose between breaking their oath by letting their patients suffer and risking their medical license (and even freedom) because they prescribed longterm, and high dose, opioids to pain patients.

Although we need to fight for reform, we must also be appreciative of, and thank, the physicians who do risk their livelihoods to prescribe the medications that give us a life worth living, even off they aren't prescribing enough. I'm not saying kiss their @$$ for prescribing tramadol/Ultram/Ryzolt (antidepressant), Nucynta/tapentadol (antidepressant), codeine, hydrocodone (weak opioid), Percocet (oxycodone paired worth poisonous acetaminophen), or low doses of morphine, oxycodone, oxymorphone, hydromorphone, or even fentanyl, but when they prescribe inadequate, but substantial doses of opioids, they deserve our gratitude.

My doctor irritated me when he refused to prescribe low dose methadone or continue to prescribe Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral (immediate release fentanyl), but I owe him thanks for prescribing high dose Duragesic and moderately high dose oxycodone, and now oxymorphone. One of the more overzealous PMs that he sent me to told him to take me off potential drugs of abuse like lorazepam (seizures, anxiety, muscle spasms, pain, nausea, insomnia), dronabinol (nausea, vomiting, & wasting), Duragesic, OTFC (generic Actiq), oxycodone, and WELLBUTRIN XL (antidepressant). Thankfully, he completely discarded his advise.

Good luck to everyone out there and try not to overdo it this holiday season. Remember, Christmas is special without you overdoing it. Your friends and family need you healthy, the cookies, cleaning, cooking, and other baking van wait or be completely skipped.


Wednesday, December 4, 2013

Wish me luck- PCP & IP

It's 9:40am and my wife has yet to sleep, and my sleep was highly fragmented thanks to her efforts to clean and organize a lot of our stuff. We're both going to be dragging when we go to my "next day" appointment later this afternoon. My pain has been out of control and, despite all of knowledge and self education, I have no idea how I'm going to convince my PCP that I'm in need of additional help.

While I both sympathize and empathize with the uncomfortable position that my PCP is in, I NEED him to help me until (unless) he van get me an intrathecal pump management physician, PM, and/or palliative care specialist.

I'm mainly asking for an increase and change in form of my clonidine (1mg pill 2/day --> clonidine patch 3mg/day), but he and I both know that my current dose of fentanyl patches has been inadequate for YEARS and he always gets uncomfortable whenever I mention poor pain control. He knows that I need to be back on low dose methadone and Actiq. My pain is getting worse and the dose of medication that's always been inadequate is extremely inadequate (even without the effects of tolerance).

Honestly, I'm extremely depressed and unsure of why I'm still fighting to live.

Sorry for the depressing post, I just needed to vent.


Tuesday, December 3, 2013

Palliative Care, the Treatment That Respects Pain - NYTimes.com

Palliative Care, the Treatment That Respects Pain

Despicable- California GOP creates fake health care website to discourage constituents from obtaining insurance

Daily Kos :: California GOP creates fake health care website to discourage constituents from obtaining insurance

What more can I add?...
Got forbid they protect themselves and keep health care costs down. God forbid even a penny of healthy policy holders premiums goes to us unhealthy "leeches".

As a pain (& cancer) patient and a citizen, I find this the lowest of low. Disability is not a crime, or even a choice.


Saturday, November 30, 2013

I'm pissed...

I'm pissed! In an effort to minimize the use of controlled substances, especially in children, doctors like to prescribe powerful more stabilizers (Lamictal, risperidone/Risperdal, Seroquel, etcetera) for pain and sleep. I myself was a victim of this kind of inappropriate prescribing.

Now, I'm bombarded with reports that THESE MEDICATIONS (Risperdal/risperidone, Seroquel, Lyrica/pregabalin, and gabapentin/Neurontin/Gralise/Horizant) ACTUALLY CAUSE PAIN!!!

I've known for years that Risperdal/risperidone is responsible for the painful facial tics, but the idea that these medications are actually causing or exasperating the conditions that they treat. That's like prescribing high dose acetaminophen/paracetamol/Tylenol for the pain of liver failure!

Do I believe that Risperdal is responsible for 100% of my pain? No, but my doctors are constantly telling me that my tumor on it's own should not be causing the severe, crippling pain that I'm experiencing on a daily basis and there isn't a doubt in my mind that this illegally marketed drug is responsible.

Risperdal could have been replaced with the following safer, cheaper alternatives:
1) melatonin (OTC supplement)
2) Z-drugs- zolpidem/Ambien/Intermezzo, Sonata/zaleplon,eszopiclone/Lunesta, zopiclone/Imovane/Zimovane/Imrest (Rx, controlled substances)
3) benzodiazepines, like lorazepam/Ativan (Rx, C4)- ideal for stress induced insomnia where you can't quiet your brain (exactly what I experienced)

Rozerem (Rx, non-controlled substance) was not approved at the time, but is currently very useful.

So why was I given an antipsychotic? Because the manufacturer illegal advertised off-label use and bribed doctors into prescribing it.

That is why the anti-controlled substances environment that we are living in is so dangerous.


Thursday, November 28, 2013

Happy Thanksgiving

I want to wish you all a Happy Thanksgiving. While pain often has a very negative effect on holidays, we must remember not to pretend that we're not in pain and overdo it. Enjoy the holiday, leave the stress and work for the healthy people.


Opioid Treatment 10-year Longevity Survey Final Report

Opioid Treatment 10-year Longevity Survey Final Report



Sunday, November 24, 2013

OT- Banned4Life Project

The Banned4Life Project

Even the Red Cross doesn't believe that a lifetime ban on blood donation for gay men is warranted, but the FDA refuses to look at the facts.

My best friend from middle school is gay and HIV+. He obviously should be banned from giving blood until we find a cure, but not every gay man is at high risk of HIV+, it's all about behavior and a more complex and accurate set of questions should determine deferral length or ban. Monogamous homosexual men are considered by the FDA to be a higher risk than heterosexual men who regularly engages in unprotected sex with multiple prostitutes.

The risks you take and the threat that you pose should determine your ability to donate DESPERATELY needed blood.

As someone who might need blood one day, it scares me that stereotypes will determine the quality of blood that I get, instead of the actual risk.

The petition:
Banned for Life- Causes

Friday, November 22, 2013

Friday Night Update

Once again, my wife and I volunteered at the local (well, 25 minute drive, ~15 miles each way) no-kill dog shelter this evening. Unfortunately, we had some rain, which caused my body to treat the 3 hours that we spent there feel like I was out and about for 30+ hours. Around two hours in, I was feeling extremely depressed and doing my very best to hide it. All of a sudden, the weirdest looking, and cutest, dog came over and jumped up on the table next to me. He sat as close to me as possible without touching me.

Maybe it was coincidence, but I truly believe that he knew exactly what was wrong and wanted to comfort me, but didn't touch me for fear of causing me additional pain.

While everyone else just thought that I was taking a break this dog knew not only that I was distressed, but that I was dealing with a lot of pain, even more so than usual.


Wednesday, November 20, 2013

Update + Sex & CP/IP

I once again feel the need to apologize. My posting has been limited lately.

As winter draws nearer, the child weather worsens, and so does my pain. The opioids only do so much and distraction techniques must pick up the slack. Unfortunately, some of the most effective distraction techniques will exasperate my pain. My wife and I have been volunteering at the local no-kill dog shelter. This is both a great distraction and a great way to add meaning to a life of unemployment. The unfortunate part is the side effect, the SIGNIFICANT increase in SEVERE pain.

My wife wants to volunteer much more often than I am physically able, so this thing that should have brought us together has been corrupted by intractable pain into another topic of animosity.

Pain corrupts most things that make like worth living, from work and volunteer work to dating, marriage, and sex. There's nothing that we can do to stop it, but that doesn't mean that we shouldn't try to fight it.

I never would have believe that at age 24 I would need to take multiple pills (breakthrough opioids and sometimes a muscle relaxer) in order to have sex. I used to save my Actiq for the end of the day because they allowed me to perform closer to the way my wife remembered before IP took over my life. Was I still able to go for six to ten hours, hell no, but two hours was no longer out of the question. Having sex half of a dozen (occasionally up to a dozen) times a day is also a pre-CP/IP pursuit, but twice in one day and three or four days a week is possible with carefully timed opioids. *quick note: Sex is a great distraction technique when the pain gets really bad, although it can also exasperate pain flares*

I believe that the biggest reason that untreated CP/IP destroyed marriages is that it destroys the closeness that comes from sex. I'm not saying that cuddling up and watching a movie doesn't have a similar effect, but everyone needs their own ratios of each. It's a lot easier to deal with a spouse (or significant other) who is grouchy from unrelenting pain if they make you feel special.

When my doctors first cut my fentanyl patches in half and eliminated my Actiq and methadone, I gave up on life. Everything suffered, especially my wife's and my sex life. We both felt like I wasn't contributing and my wife grew to resent all of the little things that she does to make my life livable. As time went on, either of us felt very sexy or sexual and several times per day quickly dropped to 2-3 times in the first month and 4-6 times the next month. Thankfully, my doctor started to realize that he was killing me and increased my pain medication. It was at that same time that I realized that it wasn't just our sex life that we had abandoned, it was most of our relationship. When you're bedbound from pain and there are multiple known cures (to being bedbound from pain, they're only treatments to the pain itself), you get depressed and lose the will to live- not sexy.

I originally had a point beyond describing the hell that is CP/IP, but I've forgotten what that is. So, I'll end with these thoughts
1) CP/IP will corrupt everything good in your life, you can't stop it, but you can minimize it's effect
2) sex is an important part of relationships, try not to let pain eliminate it from your life
3) when sex isn't an option, there are other ways to maintain closeness- USE THEM
4) without intimacy (sex, cuddling, etcetera), relationships are doomed to fail
5) tell your doctor what CP/IP is taking away from you (even if it is as embarrassing as sex), it makes it real for them
6) All men AND WOMEN with CP/IP should have testosterone levels checked, especially if you're experiencing a loss of interest in sex


P.S. I hope that everyone is in minimal pain and handling the changes in weather and the holidays without too much excessive stress.

Tuesday, November 19, 2013

Living with Pain: Handicapping the Disabled - National Pain Report

Living with Pain: Handicapping the Disabled - National Pain Report


Sorry to post another article, but this seems highly relevant, especially when so much is being done to harm the disabled, handicapped, and those in pain.


Monday, November 18, 2013

This says it all...

Although this is specifically about preventative care, ALL EFFECTIVE TREATMENTS HURT RETURN BUSINESS, especially pain care (thank for profit medicine for a lack of effective treatments, especially opioids). Why stabilize a patient when return business would be threatened?

 Yes, this is cynical and not every doctor is this heartless, but many are (consciously or subconsciously).

My PCP is one of those who has a heart. He could make a lot more with useless antidepressants, anti-epileptics, and antipsychotics (I've tried dozens already) and the countless follow up appointments that dose changes and new medications require. He could make even more with injections. As a PCP, he can't do procedures, but he could send me to yet another useless (useless for me) interventional pain management consultation (which his medical group now has in house) and REALLY milk my insurance. Unfortunately, many doctors don't care about their patients' wellbeing as much as mine does. Not only do opioids and other safer treatments (pretty much anything except surgery and procedures; generally, the higher the cost, the greater the risk) less costly, but prescriptions for controlled substances (opioids, Lyrica, benzodiazepines, etcetera) are significantly more work for the doctor and carry additional risk for them because of the overzealous DEA. 
If you're lucky enough to have a doctor willing to prescribe opioids when necessary, THANK THEM & appreciate  them because they are rare.

Think about your doctor's motives.

Healthcare is NOT a free market, we don't choose to get sick, we don't even choose our treatments, our doctors do. Methadone is the most cost effective pain treatment, but most most doctors refuse to even consider prescribing it (even when you beg). 

OT-Novocure NovoTAL & my DIPA/DIPG

I was recently exited to learn that Novocure, the makers of the miraculous (IMO) NovoTTF-100A, recently released NovoTAL customizable arrays. I had originally been told that I couldn't utilize the Novocure system because of the location of my tumor (brainstem) and the arrays, but I want given any details. I had hoped that the new, customizable arrays could be used to work around the problem. Unfortunately, the arrays simply cannot be used to treat pontine gliomas due to the need to surround the tumor with arrays on all four sides (covering your ears and mouth a minimum of roughly 20 hours per day).

Long story short, I'm going to continue to live knowing that I'm doing nothing to treat my cancer, except for cannabinoids which appear to be only slowing the growth. Although they are significantly slowing the growth, they aren't stopping or reversing the growth.

Although the Novocure system is an amazing (effective and almost no side effects- mostly adhesive reactions) treatment option, it can't help me. The thought of the tumor continuing to grow and cause more pain is daunting and scary, but this system should help a lot of other people.


Sunday, November 17, 2013

Profile image

I used to try to talk to my Dad about medical stuff, but he hated it. He just couldn't understand that I needed someone to talk to. I was 15 and slowly dying, but even worse, I was in pain. I needed someone to bounce ideas off of and discuss my very limited treatment options (no opioids for minors, even with cancer). I think that a lot of us don't understand how our loved ones don't understand that CP/IP is part of our lives.


Thursday, November 14, 2013

Another ER visit

I haven't been online much lately because I've been exhausted. On Friday, my wife and I volunteered at a local dog shelter for three hours and I WAY overdid it. I missed everything we had planned on Saturday. On Sunday, we volunteered for about eleven hours, but  I made sure that I sat most of the time (not easy for me). I washed and folded laundry, except when we took the dogs to Petco, which was really easy, almost therapeutic. I felt a lot better at the end of Sunday than the end of Friday, so we planned on volunteering on Monday (didn't happen).

Yesterday, we went to the dog shelter again, but unfortunately my wife got pretty sick. She's had  a headache/migraine for days and hasn't eaten much. She was pretty dehydrated and couldn't stop vomiting, so we went to the ER. We were taken back pretty quickly because of her cardiac history, but they left her in the room without the nurse or CRNP checking on here for over AN HOUR!!! Even once the doctor ordered the IV Zofran, Toradol, and saline it took over half an hour before they gave it to her (I had to page the buses station repeatedly). The ER want even busy! They're usually at 200% capacity (patients in hallways), but they were only at 50-70% capacity.

They discharged her without her having eaten anything

The b!tch nun that came in to discharge was extremely rude when we asked for the sandwich and ginger ale that the CRNP said she could have. She got a ginger ale. I had to give her my Zofran 8mg before we left the hospital because she was discharged so quickly.

How can you discharge a nausea and vomiting patient without making sure they can keep food down? Plus, it was 1am and we didn't have want food at home that was easy to keep down, so we had to stop and buy her something on the way home.

ERs need to stop rushing patients out the door before making sure they're okay, ESPECIALLY when they don't need the bed.

I wonder if they do it to everyone. My wife has a capitated Medicaid HMO and I have Medicare Parts A&B as primary and traditional Medicaid as secondary. Has anyone else experienced this? If so, what type of insurance do you have?

She's doing better now, thanks to my Zofran (her insurance refuses to cover it). She's been sleeping ever since, except when I wake her up to take her meds.

To be completely honest, if my ER hadn't helped her, I was ready to go out and find her some cannabis so that she could eat and drink and break the cyclical vomiting cycle. She's become acidotic from this before, so I was pretty worried. Thankfully, their 2mg of IV ondansetron and 990ml of 0.9% NaCl solution (saline) helped her enough that she could keep down 16mg (8mg*2) of oral ondansetron, then some real food.


Saturday, November 9, 2013

Paying for it

I spent a few hours volunteering at the local animal shelter yesterday. I WAY over did it yesterday, and now the nerves in my legs are on fire. I can practically trace the nerves because they're so inflamed. I missed our weekly outing with our daughter (museums, historical society, hikes, parks, carnival, Army war college, etcetera) this morning. This afternoon, I didn't get to go to the animal shelter (my wife still went and helped for two hours). And now, I'm missing out on going out with some of the people at the shelter (my wife got both of us invited while  I slept and she volunteered).

I'm not sure which is more frustrating
1) constant, unrelenting pain
2) inconceivable BTP (breakthrough pain) flares
3) missing out on everything (family stuff, social stuff)
4) NO ONE gets it

I think the worst part of this is that none of this is necessary! I'm in pain for no legitimate reason. My pain was under control (bad, but under control) with low dose methadone, Actiq, Duragesic, and oxymorphone. My pain was virtually eliminated with 3mg/day intrathecal morphine. I feel like the one sane person in a world of crazy. I feel like I'm screaming and no one is listening. I'm in excruciating pain, there's medication that can fix it, I'm insured, my insurance will cover Duragesic, Actiq, methadone, oxymorphone, AND an intrathecal pump, I have NO risk factors (including NO family history) for abuse, I don't smoke, I don't drink, I've never abused my medication, I've never been high, I have cancer, I'm dying, I've never run out of meds or needed an early refill, I've tried EVERY non-drug treatment recommended, I've tried every non-opioid, I've tried every single weaker opioid, I'm beyond compliant, I keep myself informed (as instructed, although it's being used against me now)... and, STILL, I'm treated like shit and get inadequate treatment.

How does this make any sense to anyone?


Wednesday, November 6, 2013

Cops force doctors to commit assault

Fuck this War on Drugs and everyone who participates in it, perpetuates it, and/or profits off it.
The doctors need disciplinary action and the DA needs no file charges against the officers who forced these doctors to commit forcible sexual assault.

I guess they forgot:
"I will not use my medical knowledge to violate human rights and civil liberties, EVEN UNDER THREAT"


The scary truth about our pain problem - Chatelaine

The scary truth about our pain problem - Chatelaine.com

This article is about Canada and their pain management problem, but the USA has similar issues, and this article is well written and well informed.

Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts! | Intractable Pain Journal

A blog entry that I found very interesting and relevant...

Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts! | Intractable Pain Journal


Tuesday, October 29, 2013

One Fox News chart that will mislead you about welfare and jobs in three different ways - Daily Kos

Daily Kos :: One Fox News chart that will mislead you about welfare and jobs in three different ways


Fox "News" keeps lying and people keep listening, WHY!?!?!??!

Monday, October 28, 2013

Here’s how GOP Obamacare hypocrisy backfires

Here’s how GOP Obamacare hypocrisy backfires

I know that it is political, but the politics of healthcare effect us all, especially those of us on Medicare and/or Medicaid.


Update- October 28, 2013

I realized that I've let some of you down by failing to post much more than links. For that I apologize, I owe you all some original content.

I decided to start out by updating you on hope I've been doing. Unlike most weekends, I didn't spend hours at the park, library, or historical society with my dad, wife, and daughter. Still, I'm in excruciating pain, as if I'd run a marathon. The clonidine isn't helping with the leg pain at all. Despite the fact that I can still walk sort distances and don't have paralysis, I know that I'll soon require a wheelchair because of the weakness and pain in my legs.

The opioids that my PCP (or anyone else) is willing to prescribe exclude three of the most efficacious medications, methadone, Actiq, & intrathecal morphine.

There's something that I've been considering that I am very much against overall. It has become extremely obvious that no one is going to come to my rescue. No one will prescribe what I need and no one is willing to manage an intrathecal pump on a patient like me. I am a high risk of litigation because when I die, there will be no way to prove that the tumor killed me, not the high dose opioids. Actually, the inadequate analgesia itself could cause my death (through stroke, heart attack, or even aneurysm) thanks to the constant overdose of cortisol and epinephrine/adrenaline.

I have many types of pain throughout my body. Most of it originates in my spine, brainstem, and/or brain. Most of the pain responds to mu-opioids. Unfortunately, my leg pain only responds to intrathecal mu-opioids and methadone.

Methadone is a mu-opioid, like morphine, codeine, fentanyl, sufentanil, alfentanil, oxymorphone, oxycodone, hydromorphone, hydrocodone, and others. Methadone is also a kappa-opioid and NMDA receptor antagonist. Both kappa-opioid and NMDA receptor antagonists are extremely effective in treating neuropathic pain. Contrary to popular belief, Neuropathic Pain DOES respond to mu-opioids, HOWEVER it requires significantly higher doses than other pain types. For patients, like myself, that were born with a high tolerance to opioids, all pain requires a higher dose of opioids, but neuropathic pain in patients who already require high doses requires higher doses than most doctors are willing to prescribe. Low dose methadone on its own doesn't help me with most of my pain and only partially reduces my neuropathic pain, but, when added to my fentanyl regimen, it almost eliminated my leg pain and somewhat improved my other pain.

For those of you that don't know, intrathecal pumps deliver medication into the spine (one layer deeper than an epidural). Unlike an epidural, they use opioids only or mostly opioids. They use little or no buprivicane, so you can still walk and feel your limbs. Morphine is the FDA approved opioid for intrathecal pumps (although fentanyl, sufentanil, alfentanil, hydromorphone, and methadone can also be used; hydromorphone and fentanyl are the most common off-label intrathecal opioids). ONE milligram per day of intrathecal morphine is ROUGHLY equivalent to
* 300mg/day oral morphine
* 180mg/day oxycodone
* 90mg/day oral oxymorphone
* 9mg/day IV/IM/SubQ oxymorphone
* 48mg/day oral hydromorphone
* 3-6mg/day fentanyl
* 125-250 mcg/hr fentanyl

While intrathecal morphine is 300x stronger than oral morphine, the side effects are not. I cannot tolerate 2mg of IV/IM morphine or 5mg oral morphine without my throat swelling up and a drastic increase in painful muscle spasms and my neurosurgeon knew this prior to my intrathecal morphine trial. He still decided to use morphine in my intrathecal trial. Even at 3mg/day (0.125mg/hr) intrathecal morphine (equivalent to 900mg/day oral morphine), I had ZERO side effects.

Back to my point, I'm considering making an appointment with the local interventional pain management doctor who treated me pretty well, despite his interventional only attitude.

I'm curious to know if any of you have any experience with injections for neuropathic leg pain. I'm afraid that it could make the pain even worse. I'm definitely against multiple longterm injections of steroids, but even a single injection of just the numbing agent (lidocaine or similar) carries risk. I'd love to read your feedback.

Speaking of feedback, I have been receiving reports of problems with Blogger's native commenting system, so I decided to switch to a third party system. The system that I chose is called Disqus. It does require login, but you don't have to sign up with them, you can login with your Facebook, Twitter, or Google account. You have to authorize Disqus to let you login with your social media account, but it's a onetime, quick, and easy. Please let me know what you guys think. Thanks.

If anyone would like to share their stories or ask any questions, please don't hesitate to email me or comment below.


Saturday, October 26, 2013

Don't reclassify hydrocodone as a Schedule II Controlled Substance

I urge everyone to review (and sign if you agree with) this petition.

I, personally, am so far beyond the point where even the maximum dose of Vicodin 10/300 will have any effect on me, but there were several times where I needed emergency prescriptions called into the pharmacy and if we change hydrocodone combination products to CII, many will suffer.

Kathleen Sebelius, Secretary, U.S. Department of Health and Human Services: Do not accept the recommendation of the FDA to reclassify hydrocodone as a Schedule II narcotic


Living with Pain: The Fallout from Rescheduling Hydrocodone - National Pain Report

Living with Pain: The Fallout from Rescheduling Hydrocodone - National Pain Report

Friday, October 25, 2013

Treatment of chronic pain puts doctors in a no win situation

Since I regularly complain about the abysmal treatment of chronic and intractable pain patients in the USA, I thought that I should share this 2011 article written by a physician that explains the dilemma that (at least the good) doctors go through every time a pain patient walks into their office. I've included just a small excerpt from the article below, but I promise that the article is well worth reading in it's entirety. Although it SHOULD not be necessary, it may be extremely helpful to be able to empathize with the physician the next time that you have to try to convince them that your pain deserves adequate analgesia.

Treatment of chronic pain puts doctors in a no win situation


"...How the physician can be expected to “believe” the patient, yet not rely only on subjective history by the patient but have objective evidence often for problems where no objective evidence exists, is the inherent flaw in trying to define and regulate pain management....

...We are supposed to both show compassion and adequately treat non-malignant pain with the same drugs that professional patients and opioid abusers seek to get prescriptions..."

Clonidine, yet again

I took my clonidine again eight hours ago and I'm tolerating 0.05mg well. Even now, I'm noticing mild improvements in neuropathic pain and PTSD. Unsure about headaches, they fluctuate too much to be able to tell so soon.

Doing alright overall, sick of the cold and ready for Spring already! I can feel the depression from SAD already =(

My wife was finally able to get her prescription for oxymorphone filled. She seems to be doing a little better. Unfortunately, I passed her sore throat back to her before I got rid of it.



Thursday, October 24, 2013

ACA Health Exchanges

Many people have been throwing problems with HealthCare.gov, so I wanted to remind everyone that they're are several other methods for although for health insurance through the exchanges, including calling 800-318-2596 or finding a local certified healthcare navigator.

Please don't let the problems with HealthCare.gov stop you from getting health insurance through the exchanges for reasonable prices.

My wife's aunt can get a bronze plan for FREE or a silver plan for less than a dollar a day with the credits. She's currently uninsured and doesn't qualify for Medicare for about nine more months. She doesn't qualify for Medicaid and even if our asshole governor had approved the Medicaid expansion, her income would still be too high for Medicaid.

Even those without preexisting conditions should sign up because if you don't sign up by March 31, 2014, you'll have to wait until 2015 to get coverage. Maybe you'll be lucky and stay healthy, maybe you'll lost everything. I know far too many people who lost their homes because they couldn't afford or chose not to purchase health insurance.


Wednesday, October 23, 2013

Clonidine, again

So, thanks to the killer headache after my first dose of clonidine 0.1mg (100mcg), I decided to only take 0.05mg (50mcg) last night. No headache and it did help me sleep, but didn't hit me like a brick wall. Also, I noticed since I woke up today that my neuropathic leg pain is less severe than usual. Of course, this could be part of the natural fluctuation of pain, but I'm hoping that the medication is helping.

I'm about to take my third dose and I'm worried that I'll have another bad reaction. So, fingers crossed.

I hope everyone is doing well and in minimal pain.


Monday, October 21, 2013


About two hours ago, I took my first dose of clonidine 100mcg. Aside from the drowsiness and headache, it sense tolerable. My doctor prescribed it in the hopes that it will help me with the neuropathic pain and migraines. I'm hoping that it also helps with my PTSD.

If anyone reading this has any experience with clonidine (pills or patches) for the treatment of any condition, please let me know by emailing me and/or commenting below this post.


You've got to be kidding me

So, today is my 24th birthday, but instead of doing something fun, as I had planned, I'm spending my birthday in bed (not in the good way).

My throat is killing me!

I wanted to update you guys with something lighthearted and fun to lift the mood of this blog, but I can't think of anything at the moment because of this stupid sore throat. For that, I apologize.

I hope that all of you are doing well and having minimal pain.


Saturday, October 19, 2013


As some of you may have noticed, I utilize Google Adsense on my blogs. As an OCD control freak, I keep track of my earnings. I've noticed that my earnings decreased and then SIGNIFICANTLY slowed. This tells me that Google's robot believes that there are "invalid clicks".

PLEASE DO NOT blindly click on links, it doesn't help me. If you see a link that you're legitimately interested in that's one thing, but opening multiple links in one session or opening a link every time that you're on my site can cause my site to get flagged by Adsense. Please remember that advertisers are trying to promote their business and it is unfair to them to click a link simply because you want to help the publisher.


Wednesday, October 16, 2013

Study: Cannabis Provides Substantial Relief to Those With Back Problems

Study: Cannabis Provides Substantial Relief to Those With Back Problems

OT- Cancer & Cannabis

Aside from helping with the pain and nausea, cannabis is extremely useful in the fight against primarily brain tumor, and all cancer really. It forces the cancer to kill itself and then eat itself.

Cannabinoid action induces autophagy-mediated cell death through stimulation of ER stress in human glioma cells

Delta9-tetrahydrocannabinol (THC) induces apoptosis in C6 glioma cells

A combined preclinical therapy of cannabinoids and temozolomide against glioma

Spouses (and all significant others)

I came across this photo on Facebook and it made me think of everything that our spouses and significant others go through.

As both an IP (Intractable Pain) patient and the spouse of an IP patient, I feel the stress of knowing everything that I'm putting my wife through. Just last night, my wife had to go to the ER (we got stuck in the hallway, again, so no TV for distraction and no outlet for my phone to watch something on it and no quiet or peace). I spent almost eight hours pacing back and forth. They didn't find the problem, the nurse was an opiophobic bitch, the urine test took well over two hours, anextra blanket took an hour, a ginger ale took 90 minutes, and after two hours and seven requests we were told that they had just run out of sandwiches. I couldn't do a damn thing too keep her comfortable (pain, thirst, or food).

Anyway, my point is that it isn't easy to be married to a CP/IP patient. So, I'd like to thank everyone who supports CP/IP suffers.

I'd also like to dedicate the week from 10/14-10/20 to them as the unofficial Intractable Pain Spouses Appreciation Week.

Happy IPSA week!


P.S. Please check out one of my other blogs
EDS Pain-  a joint blog between my wife and myself about her EDS
Cannabis Heals- ...about the healing qualities of cannabis and cannabinoids
Political Opiophobia- ...about Opiophobia
Cancer Hurts- ...about cancer and the pain surrounding it
Enduring Depression- ...the name speaks for itself

Sunday, October 13, 2013

Sleep, or lack thereof

Recently, I have experienced a SEVERE increase in insomnia, despite multiple sleep aids. This inspired me to write a post on insomnia.

First, anyone experiencing insomnia should mention it to their doctor because undertreated pain can cause insomnia and insomnia worsens pain.

Talking to your doctor about your insomnia doesn't mean that you need to take medication, but they need to know. Plus, if you do need medication, they'll know that you've tried other things and that it's not a brief bout of insomnia. The doctor can discuss non-drug treatments with you including better sleep habits and

I don't believe in using dangerous psychiatric drugs, like antidepressants (especially trazadone) or antipsychotics (risperidone/Risperdal, Seroquel) for sleep. It's every patient's personal choice, but I developed permanent tardive dyskinesia from it low dose, short-term risperidone/Risperdal as a child. Seroquel caused night terrors

There are many treatments for insomnia that should be considered.

* Melatonin supplements
* Rozerem

Barbiturates- rarely used anymore

* lorazepam/Ativan
* alprazolam/Xanax
* Valium/diazepam
* and countless others

OTC Medications
* diphenhydramine/Benadryl/Unisom- the generic Benadryl is IDENTICAL to Unisom, don't waste your money
* Tylenol PM- DO NOT TAKE FOR INSOMNIA, take diphenhydramine; this medication is intended for occasional treatment of pain & insomnia, but leads to the overuse of acetaminophen/paracetamol/Tylenol
* Advil PM- DO NOT TAKE FOR INSOMNIA, take diphenhydramine; this medication is intended for occasional treatment of pain & insomnia, but leads to the overuse of ibuprofen

* Lunesta/eszopiclone - this is an overpriced waste of money and should only be used as a last resort, after cheaper, equally or more effective drugs have been tried; this is the left hands isomer of zopiclone (clinically the same drug)
* Ambien/zolpidem - this is a very useful medication, but some idiots took Ambien CR and drove less than six hours later, which caused the FDA to recommend limiting the dose to 5mg, especially in women; many doctors are unwilling to go to the more effective 10mg dose, even if you don't drive and the 5mg was worthless
* zopiclone/Imovane/Zimovane/Imrest
* zaleplon/Sonata


Saturday, October 12, 2013


Suboxone is NOT PAIN MEDICATION! It is for ADDICTS! It is buprenorphine and naloxone, but the naloxone/Narcan has no real effect when swallowed.

Below 0.2mg (like the buprenorphine patches) are for pain, above 2mg (like Suboxone) buprenorphine acts more like naltrexone. It prevents true opioids from working.

Sorry for the tone of this post, I'm frustrated, I've been seeing a lot of lies about Suboxone lately and it drives me nuts because most of the lies are started by DOCTORS!

Buprenorphine also seems to be much more habit forming than most opioids (likely due to the strong affinity for three mu-opioid receptors) and appears to create a much stronger physical dependence. It's harder to get off of than methadone, fentanyl, oxycodone, and morphine, especially for pain patients. For addicts, there's no high, so there's no temptation.

My last therapist specialized in pain patients and addicted patients, he told me that most of his patients that went on Suboxone regretted it. So many of them said that they'd rather stop heroin or methadone than stop Suboxone. I've also heard similar things from pain patients in my dozen different support groups after they were tricked into taking it.

I STRONGLY advocate AGAINST anyone starting Suboxone or Butrans
(buprenorphine patches) without FIRST researching them IN DETAIL.

Suboxone helps a few, but it hurts many. It is expensive, bad medicine. Methadone is 1/60th the price of Suboxone and it works for pain, dependence, or both at any dose.

Explanation of dependence, pseudo-addiction, addiction, and tolerance, for those interested

Doctors can only LEGALLY prescribe Butrans for pain and Suboxone is only for opioid dependence. Accepting a prescription for Suboxone usually means that your chart will forever read "Opioid Dependence" or "opioid addiction".


Friday, October 11, 2013


My wife and I had our quarterly checkup with our PCP Wednesday night. As some of you know, my wife and I are under-medicated because of a number of factors, including Opiophobia, the semi-recent increase in the War on Drugs, and the fact that our PCP also does Suboxone (treats addicts).

Our PCP still refuses to increase our Duragesic. My wife was switched from OxyIR to oxymorphone, after months of requiring that multiple doses of OxyIR 30mg. He wasn't as stingy as when he put me on oxymorphone, but her pain is finally diagnosed (EDS, type 1 & 2), but he still a bit stingy.

After 7-9 months of begging for an increase, he finally increased my oxymorphone again. It's still nothing collapsedl compared to the Actiq that he refuses to prescribe since he's started doing buprenorphine/naloxone treatments (generic Suboxone and Suboxone film, mainly the film according top the literature the drug reps litter the office with). That is also why he refuses to use methadone for pain management.

Wow, off-topic, sorry. Still waiting on insurance approval, fingers crossed that we get approved and that these help.

Tuesday, October 8, 2013

Chronic Pain Harms the Brain

Chronic Pain Harms the Brain

I believe that the brain imaging illustrates the damage most clearly. Failure to treat acute or chronic pain leads to CNS damage and chronic pain. Untreated and undertreated CP/IP (Chronic Pain/Intractable Pain) leads to brain atrophy and death.

Please consider taking the time to read my previous posts  check out the links on the sidebar. Thank you.

Sunday, October 6, 2013

OT- a bit of humor

When It Comes To The Truth About Drug Addiction, Scientists Are 'Breaking Bad'

When It Comes To The Truth About Drug Addiction, Scientists Are 'Breaking Bad'

Please just take a few minutes to read it. It is a great article.

Quote from article that reiterates what I've been saying, groups like PROP are greedy, not concerned.

Dr. Hart explains why. According to the Times,

“Eighty to 90 percent of people are not negatively affected by drugs, but in the scientific literature nearly 100 percent of the reports are negative [affects],” Dr. Hart said.  “There’s a skewed focus on pathology.  We scientists know that we get more money if we keep telling Congress that we’re solving this terrible problem. We’ve played a less than honorable role in the war on drugs.”


Friday, October 4, 2013

Pacify the Shutdown

I know that this is somewhat political, but the vast majority of CP/IP patients rely on the federal government to survive (SNAP, Meals on Wheels, SSI, SSDI, Medicare, Medicaid, CHIP, etcetera) and these services are threatened by the government shutdown. Anything that can be done to end this helps us and the standard petitions are being ignored.

House Speaker John Boehner must act like an adult and stand up to tantrum-throwing, infantile Republicans to call a vote on a clean budget resolution and end the GOP shutdown. For every person who signs the petition, CREDO will send Boehner a pacifier. To read more and/or add your name now:



I haven't had a pain related post in a few days, so I wanted to check in. The first decent idea that came to mind as support. We all need great support systems, but family and friends can't always handle our pain and stress, so we turn to each other.

As an intractable pain patient, I find three problems with support groups:
1) There aren't many around me
2) I can't travel to one during a pain flare, when I need to avoid isolation most
3) Support groups only meet at select times, usually once a week

So, we turn to online support groups. There are many online support groups on Google Groups or Yahoo Groups. There are also Facebook groups, but I don't recommend them because they aren't as close knit and you can't have the messages delivered directly to your inbox. I have found several groups that I really like, but the most broad and helpful one, with the least restrictive rules is LWCP. It has also helped me the most. I will say that there are many other great groups and my recommendation of LWCP doesn't mean that I don't value the other groups. As a Moderator of LWCP (the owner has become a great friend), I review membership requests. If anyone does decide to join, please note that you found the group from my blog when you sign-upm

LWCP- Living With Chronic Pain


Thursday, October 3, 2013

Logo Contest

Wherever someone posts a link to this blog on Facebook, a terrible tools/under construction image shows up.  I short, I need a logo. Preferably something elegant and simple.

The logo should be square. Other than that, let your imagination run wild.

Unfortunately, I can't afford a cash prize, so the prize is limited to the pride of having your design chosen and helping me spread awareness about CP/IP.

Please email any submissions to me at:

They will be posted to the site and a vote will take place.  If too many are received to

I'm planning on leaving the contrary open as king as necessary, but I'm hoping to begin the voting phase by October 21 and end voting by October 31. If anyone is working on a logo and needs additional time, please email me and I'll gladly extend the deadline to get the best logo.

I've attached something that I found on Facebook that I like. I'd prefer a drawing, image, or pattern in addition to this, but I'm flexible. It doesn't need to be anything looked this, I'm just floating an idea, a starting point.


Update- October 3

I don't really have much to say, I'm still recovering from spending the day out on both Saturday and Monday. I'm still in pain. I'm trying to get by. I just want you all too know that I haven't forgotten about you.

It's 11:20am and I still haven't slept, which means I've recovered from the post-exertional malaise from the CFIDS, but now the insomnia has returned.


Wednesday, October 2, 2013

Open Enrollment

The Affordable Care Act of 2009 (HeritageCare, aka ObamaCare)'s exchanges opened yesterday, October 1, 2013, so now seems like a great time to remember everyone to ignore the propaganda and get the real information and/or sign up at:

Remember, coverage begins January 1, 2014 and open enrollment ends in 180 days (March 31, 2014) NM

For those considering opting out, remember... Even if the fine is a little cheaper than getting coverage, opting out means your not insured if you get hurt or sick. Please think through your decision. None of us are invincible!


Monday, September 30, 2013

Pediatric Geneticist for my 23 year old wife

I'd like to take a minute to apologize for posting this from my cellphone without proofreading it. I believe that I have fixed all of the topographical errors and missing pieces of information.

My wife has been suffering from unrelenting pain for years. She's seen almost every specialist known to man. She's been called crazy, hypochondriac, lazy, drug seeking, and God knows what else. She's been through a total of over eighteen months of physical therapy. She's had half of a dozen surgeries.

She was on a chronic pain support group describing her symptoms when someone told her (my wife) that she (the friend) had EDS (Ehlers–Danlos syndrome) and my wife's symptoms sounded extremely familiar. My wife and I researched EDS and decided that it was worth looking into from a clinical perspective.

In June, my wife and I had our three-month follow-up appointments with our PCP. He wasn't convinced that she had EDS, but he admitted that it was possible, so he referred her to a genetic specialist in the hopes that, even if it wasn't EDS, he might find an answer to the route of her pain and various other symptoms.

Well, my wife was scheduled to see one of the Pediatric Geneticists at Hershey Medical Center 9/30 at 10:30am. Remember, my wife and I have had quite a few issues with physicians at that hospital, especially regarding pain, opioids, and botched surgery. We didn't want to go there, but we didn't have much of a choice, so we made an exception to our "NEVER go to Hershey" rule. Anyway, we never got the paperwork in the mail, so we decided to get there an hour early.

They took us back right away. We never got a chance to fill out the paperwork, which they promised that they'd bring to the secondary waiting room ASAP. The doctor (geneticist) and the genetic counselor came in. The doctor was old, which worried me because my wife is on significant doses of opioids, many older doctors are extremely opiophobic, and the doctors at this hospital are known for rampant Opiophobia. The doctor took an extremely thorough history and exam. He told the generic counselor that the diagnosis was obvious. Every new exam test and question about her history and family history just reasured him of this apparently obvious diagnosis. He repeatedly told us that should have been diagnosed in early childhood. This diagnosis is the cause of her pain and the stretch marks that were repeatedly blamed on the prednisone. Dr Ladda spent well over an hour talking to us and reassuring us.

Anyway, he gave her an official diagnosis of EDS (Ehlers–Danlos syndrome) Type 1/2.

He proceeded to tell her that ANYTHING that helps her, including opioids and an intrathecal pump should be tried. Be then he proceeded to confirm what we already knew:
* opioids are not that dangerous
* opioids can cause physical dependence
* opioid addiction fear is vastly overblown
* opioids can be extremely effective for pain relief
* tolerance develops
* you have to weigh relief versus side effects (only side effect either of us suffers from is constipation)
* Miralax is great for OIC (opioid induced constipation)

He's recommending that her PCP
* increase her current dose of Duragesic
* refer her for an intrathecal pain pump evaluation
* stop harassing her about her need for pain medications
* order follow-up echocardiograms every 2 years

I know that I had plenty more that I wanted to say, but I can't remember,so I'll post this as-is and if anyone notices anything that I may have forgotten, please comment and/or email me.


Notes: EDS is a genetic disorder, but the geneticist informed us that the blood tests are clinically irrelevant, so the doctor diagnosed solely on examination, a series of physical tests on her joints and skin, patient history, and family history.

There is no direct treatment for EDS, there is no cure. There are lists of things that she can do to limit damage. Other than that, pain control through whatever means necessary (opioids, SCS, IDD/pump, APAP NSAIDs, Lidoderm, etcetera) should be the primary concern.

Saturday, September 28, 2013


I started writing this yesterday as a post to my support group, but couldn't focus long enough to edit it for this blog. I've tried to edit it from current tense to past tense, but I easily could have missed something and if I did, I apologize.
Written 9/29/2013
Edited 10/8/2014


I spent most of Saturday at my daughter's favorite park and, oddly enough, the local cemetery (Molly Pitcher is buried there, my 5 year old daughter can't get enough of history) with my daughter. We (my wife) and I took her to the park with my Dad today and I'm in excruciating pain. I knew that I'd pay for it, I was maxed out on my breakthrough pain meds and Zofran/ondansetron for the day before dinnertime* and I would kill for an epidural or nerve block (I don't believe in serial nerve blocks and I never really want too have one done), but it was do worth it to see her eyes light up while reading the historical marker and making new friends and racing down the slide with one of her seven new friends and finally mastering the monkey bars. We also took my Dad to Giant (grocery store) because he needed groceries and things have been tight and Bank of America hasn't exactly followed through with the pre-employment promises and it was nice to be able to help him.

Anyway, back to my point, I may not walk for days, but nothing compares to spending eight hours with your kid and being sure that she, at least for a little while, they forgot that your sick and/or dying.

She figured out that I was sick I'm her own and I just couldn't lie to her. Yes, I sugar-coated the facts, but I lost too many people without watching and can never forgive the adults that let me get blind-sided. I was the kid that was way too mature for my age and got along with adults just as well as I did with kids, I babysat my newborn cousin at the age of ten. Yes, adult(s) were in the house, but they were busy and I liked the responsibility. Anyway, she's exactly like that and we thought she could handle it, and she has. My mother doesn't agree, but she was/is a terrible mother. She's also one of the ones who let me repeatedly get blindsided. My point is that her opinion means nothing to me. In fact, her disagreement assures me that I made he right choice.

Anyway, my real reason for this post is to say that I had an awesome day and I have an awesome kid and it was worth the pain and suffering over the next 3-4 days.

* My doctor allows me to take my six daily doses as I see fit instead of every for hours. PAIN MEDICATION SHOULD ALWAYS BE TAKEN AS PRESCRIBED

Friday, September 27, 2013


I recently bought a new medication safe and I'm pretty happy with it, so I though I'd share it with you. It's not like those crappy lock boxes from Walmart that even I can open with my bare hands. It is a safe. It even has hardware to bolt it too the ground.

I got it for $30 (was $150), but the provide went up by $1.99.

Quarter Master 7825 Electronic/Digital Home Office Security Safe
http://bit.ly/18t5A2o (corrected link)
The current price is $51.99
You need coupon code AUTUMN10
To get it for ~$32 by checking out with Visa V.me mobile

It's a pretty nice digital combination safe that uses four AA batteries (included) and no one is opening it with their bare hands (like a Walmart lock box).

Outside dimensions: 13.75'' H x 9.75'' W x 9.75'' D.
Inside dimensions: 12 '' H x 8.75'' W x 8.5

Note: I am not an affiliate and do not benefit from your purchase, it's just a really good deal that I'd like to share.

Thursday, September 26, 2013

Update 9/25/2013

Another day of excruciating pain, waiting out the clock.

A little good news, they're opening a new pain management office about twenty miles from here. Unfortunately, it's part of the same group that refused to help me before. Still, that means hiring at least 1-2 doctors, which increases the odds of one of them overriding the office manager and helping me.

Wednesday, September 25, 2013


"You know that old saying... Those who can, do. Those who can't, sign our paychecks. Change that last part to make the laws."

Courtesy of Cabot

Sunday, September 22, 2013


I spent several hours at the park with my daughter yesterday, I risky over did it. I'm in excruciating pain and I can't sleep even with my nausea medications. I used another of my severely limited supply of Lidoderm (my insurance gives me crap about opioids, but doesn't covert Lidoderm without a shingles diagnosis, what a racket).

On the plus side, re-watching Mythbusters and remembering some neat facts. Mythbusters is a really good distraction.

Mini rant: pharmacy can't get fentanyl patches in stock and we're eventually going to be stuck with a new brand that may or may not be useable. I'm so sick of artificial stuff shortages thanks to the War on Drugs!


Opioid Refugees: Patients Adrift in Search of Pain Relief

Opioid Refugees: Patients Adrift in Search of Pain Relief


OT- Today in History 9/21/2013

Today is Saturday, Sept. 21, the 264th day of 2013. There are 101 days left in the year.

Today's Highlight in History:

On Sept. 21, 1912, magician Harry Houdini first publicly performed his so-called Chinese Water Torture Cell trick at the Circus Busch in Berlin, escaping after being immersed upside-down in a vertical water tank, his ankles secured in a set of stocks which made up the tank lid, which was locked into place.

On this date:

In 1792, the French National Convention voted to abolish the monarchy.

In 1893, one of America's first horseless carriages was taken for a short test drive in Springfield, Mass., by Frank Duryea, who had designed the vehicle with his brother, Charles.

In 1897, the New York Sun ran its famous editorial, written anonymously by Francis P. Church, which declared, "Yes, Virginia, there is a Santa Claus."

In 1912, legendary cartoon animator Chuck Jones was born in Spokane, Wash.

In 1937, "The Hobbit," by J.R.R. Tolkien, was first published by George Allen & Unwin Ltd. of London.

In 1938, a hurricane struck parts of New York and New England, causing widespread damage and claiming some 700 lives.

In 1948, Milton Berle made his debut as permanent host of "The Texaco Star Theater" on NBC-TV.

In 1962, "The Jack Paar Program," a weekly, prime-time show that followed Paar's stint on "The Tonight Show," began a three-year run.

In 1970, "NFL Monday Night Football" made its debut on ABC-TV as the Cleveland Browns defeated the visiting New York Jets, 31-21.

In 1982, Amin Gemayel, brother of Lebanon's assassinated president-elect, Bashir Gemayel, was himself elected president. National Football League players began a 57-day strike, their first regular-season walkout.

In 1987, NFL players called a strike, mainly over the issue of free agency. (The 24-day walkout prompted football owners to hire replacement players.)

In 1989, Hurricane Hugo crashed into Charleston, S.C. (the storm was blamed for 26 directly caused U.S. deaths). Twenty-one students in Alton, Texas, died when their school bus, involved in a collision with a soft-drink delivery truck, careened into a water-filled pit.

Ten years ago: Former Citigroup CEO John S. Reed was named temporary head of the New York Stock Exchange. Paul Martin was elected by Canada's Liberal Party to succeed Jean Chretien (zhahn kreh-TYEN') as prime minister. NASA's aging Galileo spacecraft deliberately plunged into Jupiter's turbulent atmosphere, bringing a fiery conclusion to a 14-year exploration of the solar system's largest planet and its moons.

Five years ago: South African President Thabo Mbeki (TAH'-boh um-BEH'-kee) announced his resignation. "Mad Men" became the first basic-cable show to win the top series Emmy; "30 Rock" and its stars Tina Fey and Alec Baldwin won comedy awards. The United States took back the Ryder Cup with a 16 1/2-11 1/2 victory over Europe. Baseball said farewell to the original Yankee Stadium as the Bronx Bombers defeated the Baltimore Orioles 7-3.

One year ago: No one was injured when a plane carrying Ann Romney made an emergency landing in Denver after smoke filled the cabin. The wife of the Republican presidential nominee Mitt Romney was traveling from Omaha, Neb., to Los Angeles, when an apparent electrical fire broke out. A man was bitten multiple times after leaping from a monorail into a tiger exhibit at the Bronx Zoo. People lined up to buy Apple's iPhone5 as it went on sale in the United States and several other countries.

Today's Birthdays: Poet-songwriter Leonard Cohen is 79. Author-comedian Fannie Flagg is 72. Producer Jerry Bruckheimer is 70. Musician Don Felder is 66. Author Stephen King is 66. Basketball Hall of Famer Artis Gilmore is 64. Actor-comedian Bill Murray is 63. Hall of Fame jockey Eddie Delahoussaye is 62. Rock musician Philthy Animal is 59. Former Australian Prime Minister Kevin Rudd is 56. Movie producer-writer Ethan Coen is 56. Actor-comedian Dave Coulier is 54. Actor David James Elliott is 53. Actress Serena Scott-Thomas is 52. Actress Nancy Travis is 52. Actor Rob Morrow is 51. Retired MLB All-Star Cecil Fielder is 50. Actress Cheryl Hines is 48. Country singer Faith Hill is 46. Rock musician Tyler Stewart (Barenaked Ladies) is 46. Country singer Ronna Reeves is 45. Actress-talk show host Ricki Lake is 45. Rapper Dave (De La Soul) is 45. Actor Rob Benedict is 43. Actor James Lesure is 42. Actor Alfonso Ribeiro is 42. Actor Luke Wilson is 42. Actor Paulo Costanzo is 35. Actor Bradford Anderson is 34. Actress Autumn Reeser is 33. TV personality Nicole Richie is 32. Actress Maggie Grace is 30. Actor Joseph Mazzello is 30. Rapper Wale (WAH'-lay) is 29. Actors Nikolas and Lorenzo Brino are 15.

Thought for Today: "The crisis of yesterday is the joke of tomorrow." — H.G. Wells, English author (born this day in 1866, died 1946).

Charting the Depths- CP/IP frequently causes Depression

Depression remains rampant, misunderstood, and stigmatized. For decades, the disease model of depression has dominated discussion of what depression is and what should be done about it. Here, we take a more balanced view of depression and strive to bring this topic out of the dark. We are devoted to expanding the conversation by linking up people who currently suffer from depression, people who have overcome depression, and the friends and family who care about people who suffer from depression. Please join me in helping to start a better, richer national conversation about depression.


Depression comics

These comics are intended to describe what it's like to live with depression, but several of them apply to chronic and intractable pain.


Is a glass of water all that different from pain?

I received an email thatcan easily be used to explain how difficult living chronic pain can be...

A young lady confidently walked around the room with a raised glass of water while leading a seminar and explaining stress management to her  audience.

Everyone knew she was going to ask the ultimate question, 'half empty or half full?' She fooled them all. "How heavy is this glass of water?" she inquired with a smile.

Answers called out ranged from 8 oz. To 20 oz.

She replied, "The absolute weight doesn't matter.  It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.  If I hold it for a day, you'll have to call an ambulance.  In each case it's the same weight, but the longer I hold it, the heavier it becomes."

She continued, "and that's the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."

"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden- holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night. Pick them up again tomorrow if you must.

... many of us can handle acute pain without outside help beyond acetaminophen/paracetamol/Tylenol or ibuprofen/Advil/Motrin, but handling chronic pain of equal severity is a much more daunting task.

Saturday, September 21, 2013


The FDA took over 40 years to finalize the monograph for acetaminophen. During which we eradicated small pox, decoded the human genome and cloned a sheep.

Acetaminophen also the most deadly OTC drug, with over 150 people dying each year in the USA alone. More than half are accidental overdoses, not suicides or longterm effects.

Acetaminophen alone kills more people per year than all prescription opioids COMBINED.

Infant oral solutions are actually 3x more potent than children's oral solutions because its terribly difficult to make children swallow medicine. Also the "infant" dose applies to children up to 3 years old. Imagine trying to keep this straight. Or, if a physician means children's but you buy infants because they didn't specify, you could overdose your child by a factor of 3, and that could kill them. This isn't just a hypothetical, it has happened.

Just things to think about when we self medicate or, for the health care providers, medicate your patients or, for parents, medicate our children.

Prescription Assistance

I encourage everyone, with or without insurance, to check out the Partnership for Prescription Assistance for discounts and free medications. Every cash patient should have an Rx discount card.



Walgreens' "secret checklist" reveals controversial new policy - 13 WTHR Indianapolis

Walgreens' "secret checklist" reveals controversial new policy - 13 WTHR Indianapolis


Someone actually got a copy of the policy. The PDF is available at:



Thursday, September 19, 2013

Rat Park Comic

Please check out the comic version of the Rat Park experiment, which shows that opioids are not the addictive demons that we've been told that they are.



OT- Today in History 9/19

Today is Thursday, Sept. 19, the 262nd day of 2013. There are 103 days left in the year.

Today's Highlight in History:

On Sept. 19, 1982, the smiley emoticon was invented as Carnegie Mellon University professor Scott E. Fahlman proposed punctuating humorously intended computer messages by employing a colon followed by a hyphen and a parenthesis as a horizontal "smiley face." :-)

On this date:

In 1777, the first Battle of Saratoga was fought during the Revolutionary War; although the British forces succeeded in driving out the American troops, the Americans prevailed in a second battle the following month.

In 1796, President George Washington's farewell address was published.

In 1881, the 20th president of the United States, James A. Garfield, died 2 1/2 months after being shot by Charles Guiteau; Chester Alan Arthur became president.

In 1934, Bruno Hauptmann was arrested in New York and charged with the kidnap-murder of Charles A. Lindbergh Jr.

In 1945, Nazi radio propagandist William Joyce, known as "Lord Haw-Haw," was convicted of treason and sentenced to death by a British court.

In 1957, the United States conducted its first contained underground nuclear test, code-named Rainier, in the Nevada desert.

In 1959, Soviet leader Nikita Khrushchev, visiting Los Angeles, reacted angrily upon being told that, for security reasons, he wouldn't get to visit Disneyland.

In 1960, Cuban leader Fidel Castro, in New York to visit the United Nations, angrily checked out of the Shelburne Hotel in a dispute with the management; Castro ended up staying at the Hotel Theresa in Harlem.

In 1961, Barney and Betty Hill, a New Hampshire couple driving home from vacation, experienced what they later claimed under hypnosis was a short-term abduction by extraterrestrials.

In 1962, the Western TV series "The Virginian" debuted on NBC.

In 1970, the situation comedy "The Mary Tyler Moore Show" debuted on CBS-TV.

In 1985, the Mexico City area was struck by a devastating earthquake that killed at least 9,500 people.


Ten years ago: Former Hurricane Isabel raced from Virginia to Canada, delivering far less rain than expected but leaving millions without power. Iraqi leader Saddam Hussein's defense minister, Sultan Hashim Ahmad, surrendered to U.S. forces.

Five years ago: Struggling to stave off financial catastrophe, the Bush administration laid out a radical bailout plan calling for a takeover of a half-trillion dollars or more in worthless mortgages and other bad debt held by tottering institutions. Relieved investors sent stocks soaring on Wall Street and around the globe.

China's food safety crisis widened after the industrial chemical melamine was found in milk produced by three of the country's leading dairy companies.

Hours after performing for thousands of South Carolina college students, former Blink-182 drummer Travis Barker and celebrity DJ AM were critically injured in a fiery Learjet crash that killed four people. (DJ AM, whose real name was Adam Goldstein, was found dead in his apartment on Aug. 28; he was 36.)

Baseball's new instant replay system produced its first reversal when Tampa Bay's Carlos Pena had a two-run double changed to a three-run homer during the fourth inning of a game against Minnesota. (The Rays beat the Twins, 11-1.)

One year ago: Members of Congress presented the Congressional Gold Medal to Myanmar democracy leader Aung San Suu Kyi (ahng sahn soo chee) in a ceremony in the Capitol Rotunda. The Justice Department's internal watchdog found fault with the agency's handling of a gun-trafficking probe in Arizona that resulted in hundreds of weapons turning up at crime scenes in the U.S. and Mexico. The inspector general's report referred more than a dozen people for possible disciplinary action for their roles in Operation Fast and Furious. The Windseeker ride at Knott's Berry Farm in Buena Park, Calif., broke down, leaving about 20 riders who expected a three-minute thrill dangling 300 feet over the amusement park for nearly two hours.

Today's Birthdays: Author Roger Angell is 93. TV host James Lipton ("Inside the Actors Studio") is 87. Actress Rosemary Harris is 86. Former Defense Secretary Harold Brown is 86. Actor Adam West is 85. Retired MLB All-Star pitcher Bob Turley is 83. Actor David McCallum (TV: "NCIS") is 80. Singer-songwriter Paul Williams is 73. Singer Bill Medley is 73. Singer Sylvia Tyson (Ian and Sylvia) is 73. Singer Freda Payne is 71. Golfer Jane Blalock is 68. Singer David Bromberg is 68. Actor Randolph Mantooth is 68. Rock singer-musician Lol Creme (10cc) is 66. Former NFL running back Larry Brown is 66. Actor Jeremy Irons is 65. Actress Twiggy Lawson is 64. TV personality Joan Lunden is 63. Singer-producer Daniel Lanois is 62. Actor Scott Colomby is 61. Musician-producer Nile Rodgers is 61. College Football Hall of Famer and former NFL player Reggie Williams is 59. Singer-actor Rex Smith is 58. Actor Kevin Hooks is 55. Actress Carolyn McCormick is 54. Country singer Jeff Bates is 50. Country singer Trisha Yearwood is 49. Actress-comedian Cheri Oteri is 48. News anchor Soledad O'Brien is 47. Rhythm-and-blues singer Espraronza Griffin (Society of Soul) is 44. Celebrity chef Michael Symon is 44. Actress Sanaa Lathan (suh-NAH' LAY'-thun) is 42. Actress Stephanie J. Block is 41. Rock singer A. Jay Popoff (Lit) is 40. Comedian and TV talk show host Jimmy Fallon is 39. TV personality Carter Oosterhouse is 37. Actress-TV host Alison Sweeney is 37. Rock musician Ryan Dusick is 36. Folk-rock singers-musicians Sara and Tegan (TEE'-gan) Quin are 33. Actor Columbus Short is 31. Rapper Eamon is 30. Christian rock musician JD Frazier is 30. Actor Kevin Zegers is 29. Actress Danielle Panabaker is 26.

Thought for Today: "Start every day off with a smile and get it over with." — W.C. Fields, American comedian (1880-1946).

Wednesday, September 18, 2013

It's not the morphine, it's the size of the cage: Rat Park experiment upturns conventional wisdom about addiction

It's not the morphine, it's the size of the cage: Rat Park experiment upturns conventional wisdom about addiction


The government (especially DARE) lied to us. Just like they did with cannabis. Does anyone remember the study that "proved" that cannabis kills brain cells? The one where they suffocated monkeys with smoke over and over again, then dissected their brains and pointed to the suffocation damage and said that cannabis kills brain cells, even though it actually heals the brain.

We really can't trust our government to study anything (CFIDS, cannabis, opioids, the majority of drugs approved by the FDA in the past decade).


Sunday, September 15, 2013

RSO/cannabis & other cancer cures

Cancer is worth more than our lives. Cannabis both prevents and treats cancer, including the most deadly childhood cancer, DIPA/DIPG

Essex tea is another potential treatment that got shut down.

Severe Flare

I want to amputate my legs right now. The pain is unbelievable. Nothing is helping. I'd give anything for relief. I'd give wanting to have an unravel pump, Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral, and/or methadone (in addition to the Duragesic).

It is despicable that we must suffer when there are drugs and treatments that could help us, especially when we can pay for them.

It's hard to believe that we went from opioids being OTC (over the counter), to CII, and now to practically unattainable.


Friday, September 13, 2013

OT- Today in History

I know that this board it's supposed to be about pain, but I'm in too much pain to give the high quality posts that I'd prefer and we can all use some distraction.

Today is Friday, Sept. 13, the 256th day of 2013. There are 109 days left in the year. The Jewish Day of Atonement, Yom Kippur, begins at sunset.

Today's Highlight in History:

On September 13, 1788, the Congress of the Confederation authorized the first national election, and declared New York City the temporary national capital.

On this date:

In 1759, during the final French and Indian War, the British defeated the French on the Plains of Abraham overlooking Quebec City.

In 1803, Commodore John Barry, considered by many the father of the American Navy, died in Philadelphia.

In 1912, a state funeral was held in Japan for Emperor Meiji.

In 1948, Republican Margaret Chase Smith of Maine was elected to the U.S. Senate; she became the first woman to serve in both houses of Congress.

In 1959, Elvis Presley first met his future wife, 14-year-old Priscilla Beaulieu, while stationed in West Germany with the U.S. Army. (They married in 1967, but divorced in 1973.)

In 1962, Mississippi Gov. Ross Barnett rejected the U.S. Supreme Court's order for the University of Mississippi to admit James Meredith, a black student, declaring in a televised address, "We will not drink from the cup of genocide."

In 1970, the first New York City Marathon was held; winner Gary Muhrcke finished the 26.2-mile run, which took place entirely inside Central Park, in 2:31:38.

In 1971, a four-day inmates' rebellion at the Attica Correctional Facility in western New York ended as police and guards stormed the prison; the ordeal and final assault claimed the lives of 32 inmates and 11 employees.

In 1989, Fay Vincent was elected commissioner of Major League Baseball, succeeding the late A. Bartlett Giamatti (juh-MAH'-tee).

In 1993, at the White House, Israeli Prime Minister Yitzhak Rabin and PLO chairman Yasser Arafat shook hands after signing an accord granting limited Palestinian autonomy. "Late Night with Conan O'Brien" premiered on NBC.

In 1996, rapper Tupac Shakur died at a Las Vegas hospital six days after he was wounded in a drive-by shooting; he was 25.

In 1998, former Alabama Gov. George C. Wallace died in Montgomery at age 79.

Ten years ago: Angry mourners swarmed Fallujah (fuh-LOO'-juh), Iraq, a day after eight Iraqi police were killed in a friendly fire incident involving U.S. troops; the U.S. military apologized for the deaths. The California Democratic Party voted to endorse Lt. Gov. Cruz Bustamante (boost-ah-MAHN'-tay) while continuing to support Gov. Gray Davis in the October 7 recall election. Indiana Gov. Frank O'Bannon died at age 73. In Las Vegas, Sugar Shane Mosley beat Oscar De La Hoya, winning a close but unanimous decision to take the WBC and WBA 154-pound titles.

Five years ago: Rescue crews ventured out to pluck people from their homes in an all-out search for thousands of Texans who had stubbornly stayed behind overnight to face Hurricane Ike. After wild conjecture over who would play Alaska Gov. Sarah Palin on "Saturday Night Live," writer-performer Tina Fey returned to her old show for an opening sketch featuring her and Fey's former "Weekend Update" co-host Amy Poehler as Sen. Hillary Clinton.

One year ago: Chanting "death to America," hundreds of protesters angered by an anti-Islam film stormed the U.S. Embassy compound in Yemen's capital and burned the American flag. New York City's Board of Health passed a ban on the sale of big sodas and other sugary drinks, limiting the size sold at restaurants, concession stands and other eateries to 16 ounces.

Today's Birthdays: Actress Barbara Bain is 82. Actress Eileen Fulton ("As the World Turns") is 80. TV producer Fred Silverman is 76. Former White House spokesman Larry Speakes is 74. Actor Richard Kiel is 74. Rock singer David Clayton-Thomas (Blood, Sweat & Tears) is 72. Actress Jacqueline Bisset is 69. Singer Peter Cetera is 69. Actress Christine Estabrook is 63. Actress Jean Smart is 62. Singer Randy Jones (The Village People) is 61. Record producer Don Was is 61. Actor Isiah Whitlock Jr. is 59. Actress-comedian Geri Jewell is 57. Country singer Bobbie Cryner is 52. Rock singer-musician Dave Mustaine (Megadeth) is 52. Radio-TV personality Tavis Smiley is 49. Rock musician Zak Starkey is 48. Actor Louis Mandylor is 47. Olympic gold medal runner Michael Johnson is 46. Rock musician Steve Perkins is 46. Actor Roger Howarth is 45. Actor Dominic Fumusa is 44. Actress Louise Lombard is 43. Tennis player Goran Ivanisevic (ee-van-EE'-seh-vihch) is 42. Country singer Aaron Benward (Blue County) is 40. Country musician Joe Don Rooney (Rascal Flatts) is 38. Actor Scott Vickaryous is 38. Singer Fiona Apple is 36. Contemporary Christian musician Hector Cervantes (Casting Crowns) is 33. MLB pitcher Daisuke Matsuzaka is 33. Actor Ben Savage is 33. Rock singer Niall Horan (One Direction) is 20. Actor Mitch Holleman ("Reba") is 18.

Thought for Today: "Better to be without logic than without feeling." — Charlotte Bronte (BRAWN'-tee), English author (1816-1855).