Wednesday, April 30, 2014
It's 10am my time and I'm officially giving up on sleep. I miss the days when I could sleep for more than 2-3 hours at a time, not that I've ever been able to sleep when I want. My insomnia started when I was still in a crib, it's my first memory. Of course, my insomnia only got worse as my pain worsened. I developed childhood Fibromyalgia and then brain cancer. The brain cancer caused severe migraine-like headaches and worsening pain... all of which has worsened my insomnia (which worsens pain) to the point where 4mg of lorazepam AND 8mg of Rozerem don't help me get to sleep without the additional help of 2-3 4mg tizanidine/Zanaflex. It shouldn't take six pills to get to sleep! Worse yet, it only gets me a few hours.
Tuesday, April 29, 2014
As you may have noticed, I haven't been posting a lot of personal information lately. I've been stretched a little thin and my family comes first. Unfortunately, that means that my blog has been conning second. Aside from when I was sick, I've been extremely careful not to completely abandon this blog because many people have told me that they've benefited from my experience and knowledge. Unfortunately, the easiest posts are links to useful information, which I've been making heavy use of.
Since moving to a healthier home and experiencing a reduction in stress, my pain has been much easier to manage. Although my pain rarely drops below 5/10 (averaging 6-7/10 & still experiencing flares of 10/10), I've been much more active. In the past 48 hours, I've taken my daughter to two parks, played Frisbee, and played Wii Sports Golf, Bowling, & Baseball. I was exhausted by the time that I went to bed last night, but it was so worth it!
I'm still not able to go back to work or college yet, but I'm once again able to fully care for my daughter, including running around the park & playing Frisbee.
The pain in my legs last night made me miss the relief that methadone (not to mention Actiq/fentanyl lozenges & intrathecal morphine gave me. Thankfully, I've been able to recover amazingly with a single night sleep.
Once this test is finally covered by insurance, the price will really drop, and clinical trials will actually be limited to Fibromyalgia patients and there is a chance that will finally get an FDA approved drug that treats Fibromyalgia (not the <10% effective psychiatric drugs that we have today).
Monday, April 28, 2014
Marijuana Spray Gets ‘Fast Track’ Review from FDA - National Pain Report
As a cancer patient, I'm ecstatic about the possible approval of Sativex for cancer pain. I'm currently using Marinol/dronabinol, which is synthetic THC suspended in sesame oil, encapsulated in gelatin. It's terrible medication. The best thing is herbal cannabis, but Sativex is a close second. It's an all natural herbal tincture spray. It isn't just THC, it also includes plenty of CBD and every other cannabinoid.
Sunday, April 27, 2014
I can't tell you how many people were FORCED into these injections so that crooked doctors could make big money from insurance and avoid prescribing opioids. This NEVER would have been an issue if it wasn't for a combination a Opiophobia and greed/for profit healthcare.
Thursday, April 24, 2014
Marijuana Rated Most Effective for Treating Fibromyalgia - National Pain Report
With 10% of patients getting relief from FDA approved "Blockbuster" drugs and well over half of Fibromyalgia patients getting relief from cannabis, why spend ~$300/month for toxic drugs when safe, all natural cannabis can be grown at home for roughly free?
Drug companies make billions by keeping cannabis illegal through corruption & big money in politics
The most effective drugs don't get approved without patent protection (cannabis, ibogaine, and countless others)
The worst part is that cannabis is the safest drug of all time (ZERO deaths in the thousands and thousands of years of recorded use) and Cymbalta/duloxetine, Lyrica/pregabalin, and Savella/milnacipran kill countless people every year.
Wednesday, April 23, 2014
Apparently, I missed this while sick with an eight day stomach bug, but in case you've missed it Zohydro AND compounded hydrocodone are both available in Massachusetts. The judge set a powerful precedent, and I'd personally thank her for using her brain and not giving in to opiophobic propaganda and paranoia.
Thursday, April 17, 2014
Study Finds Chinese Herb More Effective in Treating Rheumatoid Arthritis - National Pain Report
The herb is more effective than methotrexate, but easier on the body. When combined, the herb & methotrexate are even more effective than either individually.
Monday, April 14, 2014
Federal Judge Asked to Lift Ban on Zohydro - National Pain Report
"There was no indication when federal Judge Rya Zobel would rule on the case. Last week Zobel indicated she might overturn the ban, saying,“I think that, frankly, the governor is out of line on this.”"
My Story: Feeling Like a Criminal - National Pain Report
Thanks to the same laws that make this person feel like a criminal, I am forced to do without cannabis. Instead, I get ultra expensive dronabinol (generic Marinol; CIII), which doesn't work as well, has more side effects, makes you "higher" than cannabis. Herbal cannabis has also been shown to kill glioma cells. Inoperable gliomas, like mine, have few other treatment options.
Thursday, April 10, 2014
"Bang-up statistics for rates of insurance under Obamacare are one thing, but for the truly human benefit of the law, you have to look deeper. And here's an excellent example: Actual health care, in the form of prescription drugs, is getting to the people who need it."
The early data isn't showing a lot of birth control, instead it is showing treatment for life-threatening illnesses, like cancer, HIV/AIDS, intractable pain, rheumatoid arthritis, lupus, other rheumatologic illnesses & autoimmune diseases, multiple sclerosis, and other neurological illnesses. Although inadequate (& wasteful, thanks to the Republican solution of including private insurers), the ACA has had meaningful impact on the lives of so many people.
So many more could be helped (for a lot less money) if we could switch to single payer and cut out the middle men. This would also avoid the complication and confusion that had plagued HeritageCare (aka ObamaCare).
Remember, HeritageCare (private insurers getting tax dollars to cover lie income people) was the Heritage Foundation's "solution" to single payer & the public option. They're fighting their own creation.
"In a real life example of how Obamacare is changing everything, our local newspaper ran an article about the closing of the 9th Street Ministry Medical Clinic.
"It was announced last week that 9th Street Ministries will be concluding their medical clinic mission, which had been ongoing monthly to offer free medical services to those in need since first starting in 1998. The final day for the medical clinic will be Thursday, April 24, and that will conclude the mission that has been in place for almost 16 years."
The article tells how the ministry has been operating once a month for years to give people healthcare on a first come, first served basis. This care was provided by volunteers. My mother actually volunteered at the clinic and they would see as many as 300 a day. Many of these people would wait all day for the chance to see a doctor. Most of the patients were people who could not afford to see a doctor, but were not eligible for Medicaid or Medicare. Why would they close this clinic down?
"We’ve gone from seeing around 300 people a month on a regular basis, but as people were enrolling in Obamacare, the numbers we were seeing have dropped. We were down to 80 people that came through the medical clinic in February, all the way down to three people at the medical clinic in March. Our services won’t be needed anymore, and this will conclude our mission.”
We live in one of the most conservative places in Arkansas.
The Repub's want to tell those people that once a month waiting all day for a chance to see a doctor was good enough.
Thankfully, President Obama did not think so."
The "Tip Jar" (comments) are worth reading too.
I see that MI has enrolled over 50K ...
... in Medicaid since it expanded on 4/1. I think the "single payer" option that is Medicaid has been the most important effect of the whole ACA. Red state Guvs and legislators who have been blocking expansion are going to be facing an enraged public all the way up until election day this November and they will pay a price. Polling is showing incumbent Guvs in GA and Kansas behind in their reelections! People love their Obamacare.
Apr 9, 7:16a- Reinvented Daddy
People find it difficult to believe that THEIR representatives would be out to hurt them. Then, after a while, they remember their daddy's razor strop and they ask whether those whippings really hurt daddy more than it hurt them.
After a while, some people don't deserve the benefit of the doubt."
Apr 9, 7:30a- Hannah
Wednesday, April 9, 2014
I know that Zogenix will get a lot of crap from the anti-opioid lobby (aka rehab business) for this, but I'm glad that they're protecting Massachusetts CP/IP patients and challenging this drastic overreach.
Tuesday, April 8, 2014
To clarify... The government is advocating it's use in pain patients who are BELIEVED to be in overdose. The problem is that most people can't tell an overdose from fatigue or the flu. Intractable pain patients on opioids are usually opioid tolerant and naloxone/Narcan/Evzio causes abrupt withdrawal. In a patient who actually needs opioids (intractable pain patient, not drug addict), this abrupt withdrawal can trigger a heart attack.
This is unnecessary because...
If pain patient (or addict) overdoses, the symptom is respiratory depression, which can be overcome with oxygen, BiPAP, and/or CPR. This product is intended to reverse believed overdose while waiting for an ambulance, but CPR has been fine for years.
Naloxone/Narcan/Evzio reverses the opioids, which is fine for an opioid-naive patient, but this device is only for opioid tolerance patients.
With so many family members not understanding us and many being called druggies, would you really want them wielding an opioid blocker? I can easily see easy access to naloxone leading to pain patients (& addicts) being forcefully injected with naloxone against their will to "prove" to them that they're an addict (those people never understand the different being addiction and tolerance & physical dependence).
This product should only be prescribed directly to the addict or pain patient, not "concerned family members" WITH THEIR PERMISSION. It should be treated like Antabuse (giving to someone without permission is forbidden and legally considered poisoning, and carries a black box warning).
Monday, April 7, 2014
April 4, 2014 at 7:14 pm
I guess I need a new Medic Alert tab for my necklace in case I faint the next time I am in Safeways shopping for dinner, and succumb to shock over the high prices they’re charging these days for a pound of hamburger.
April 7, 2014 at 6:36 pm
Naloxone only reverses opioids, but the vast majority of overdose deaths are not opioid only, they usually involve alcohol and/or benzodiazepines (Valium/diazepam, Xanax/alprazolam, Ativan/lorazepam, etcetera)
A Pained Life: Medication Jeopardy - National Pain Report
"I was concerned about being able to get methadone when I returned home to New York City.
“My mentor is there. He’ll give you the prescriptions. Don’t worry,” Friedman said.
Unfortunately, he was wrong.
When I told the doctor, “Dr. Friedman told me you would write the methadone prescriptions for me,” he stood up, said he would not, ended the appointment, and sent me on my way – with no prescription or instructions about stopping the drug."
~~~~~ Comment #1 ~~~~~
I was cold turkeyed from methadone (although I had oxycodone, which helped with the mu-opioid activity, but not kappa-opioid or NMDA).
Methadone it's cheap and effective, but it is also misunderstood because of a few overdoses caused by uneducated physicians. Methadone should NEVER be increased more than once every 5-7 days. Other opioids can be increased every few days or even every few hours. If a doctor increases methadone as often as they increase oxycodone, oxymorphone, morphine, or fentanyl, the patient could overdose.
There is a irrational fear surrounding methadone and because it is about $10/month, there's no incentive for drug companies to spend money dispelling those myths. Some brand name drug companies will scare doctors away from methadone to boost sales of OxyContin (oxycodone ER - major culprit), Kadian (12 hr morphine ER), Avinza (24 hour morphine ER), Exalgo (24 hr hydromorphone ER), Opana ER (oxymorphone ER), and, now, Zohydro (12 hr hydrocodone ER).
Sorry, I don't mean to sound like a conspiracy theorist.
Duragesic/fentanyl patches 400mcg/hr have no effect on my neuropathic leg pain, but low dose methadone (even 5mg/day) can have huge effects.
Methadone is uniquely effective because it it's not a pure mu-opioid (like morphine, oxycodone, fentanyl, sufentanil, alfentanil/Alfenta, oxymorphone, hydrocodone, hydromorphone, codeine, and remifentanil). Methadone is a mu-opioid, but it's also a kappa-opioid, an NMDA receptor antagonist. Methadone is ideal for nerve pain, but it is also effective for back pain and cancer pain.
~~~~~ Comment # 2 ~~~~~
Robert is correct, this is medical malpractice.
Untreated and under treated intractable pain can and do kill, usually through cardiac over-stimulation and various changes in the cardiac, pituitary, and adrenal systems. Dr. Forest Tennant explains it best in 'The Intractable Pain Patients' Handbook for Survival', which is (legally) available for free.
Dennis is correct, pain patients need to be given a voice among those who regulate pain treatment. To those who lost kids, I'm sorry, but you kids was an addict who broke the law and took powerful medications without any regard for the directions. These kids toss random points in a "candy dish" and swallow handfuls, you can't regulate that kind of stupidity. We pain patients are completely different from the drug abusers who make our lives hell.
A Pained Life: Seeing Failure as Success - National Pain Report
..."I remember reading a note one of my first doctors had written: “She is being victimized by her pain.”
I did not understand what he meant at the time. Now I get it. I feel a victim, not only of the pain, but of the lack of treatment options for it."...
..."I looked up the definition of victim online: “A person or thing that suffers harm, death, etc… from some adverse act, circumstance, etc.”
This added disclaimer surprised me:
“Using the word victim or victims in relation to chronic illness or disability is often considered demeaning and disempowering. Alternative phrases such as who experiences, who has been diagnosed with, or simply with and then the name of the disability or illness, can be used instead.”
But we are victims. Of pain that often controls our lives. Of a War on Drugs that we need to help us live. Without those drugs the pain can be so overwhelming that death can be seen as preferable, and for way too many of us, has been.
Changing the way we say it, “I am not a victim of my pain, I experience chronic pain,” does not change the experience of being victimized.
So maybe it is time to turn the equation around.
If we can look at each failure as bringing us closer to being helped, then we are no longer victims. We become warriors. And each new treatment brings us closer to the one where we just may prevail."... (if it is legal & not under attack - don't hold your breath for Sativex or opioids).
Friday, April 4, 2014
My Story: Life with Interstitial Cystitis - National Pain Report
This is the story of a woman afflicted with a Interstitial Cystitis due to physician malpractice. She was promised that the pain would subside, but it didn't. She has to go to the bathroom 60-70 times a day, but was denied disability.
She is a fellow pain warrior and my thoughts are with her. Hopefully, she will receive her disability soon and not lose even more than the intractable pain and IC have taken from her already.
For those who don't know, I live in Pennsylvania, a very un-friendly state when it comes to pain control (can't find a pain doc to manage an intrathecal pump and we have no medical cannabis).
Anyway, it's raining today and my pain is flaring. What many people do not know is that it is not the rain that caused flare ups (at least not for me, or my wife). If it rained for 40 days and 40 nights, I would be fine days 3-39 (days 1, 2, 40, & 41 would be the issue). For me, the changes in the weather (& barometric pressure) are the issue. Every time it rains, I get hit twice, once when the storm system rolls in and again when the storm system rolls back out. This double whammy makes me loathe Pennsylvania's weather.
I've also read that some parts of the country are experiencing extreme weather (tornadoes). To all of them, I wish you good luck & safety.
I would love to read about your various experiences with the weather, including extreme weather conditions. Please leave any stories in the comment section.
Tuesday, April 1, 2014
Okay, so the title seems a little silly, but today isn't just April Fools Day, it is also the 6th anniversary of my cancer diagnosis.
I've had symptoms for over a decade, and my first brain MRI on January 17, 2006 (8.25 years ago), where they found an area of increased signal in the periaqueductal gray matter of the Pons of the brainstem. My PCP called me at 8:46PM to tell me that I had a cyst, an infection, a tumor, or scar tissue from when I was assaulted by my grandfather 5 months earlier (the day before school started).
On April 1, 2008, I had my first appointment with Arnold G. Salotto MD, my neurosurgeon, who taught me how to read the MRIs and diagnosed me with DIPA (Diffuse Intrinsic Pontine Astrocytoma), a subset of DIPG (Diffuse Intrinsic Pontine Glioma). This is a childhood cancer that is typically fatal within 6-12 months of diagnosis (with treatment) and my tumor headaches started years before the first MRI and intensified 7-8 months before the first MRI (delayed diagnosis).
It is nothing short of a miracle that I'm still alive today, especially since I'm ineligible for or uncomfortable with conventional treatments, such as:
* IMRT - most precise form of external beam radiation using electrons (X-ray)
* radiation pellets (can't be safely placed)
* Proton therapy - external beam radiation using protons (better than X-ray & safer) -closest hospital is in Philadelphia (~200 miles away)
* chemotherapy (oncologist rejected)
* surgery (to dangerous, even a biopsy isn't safe)
* Novocure NovoTTF-100A (can't be used on brainstem)
Cannabinoids, and maybe melatonin, have teamed up with my immune system to significantly slow the growth of the tumor. I wouldn't be alive today without delta-9-tetrahydrocannabinol (THC), aka dronabinol/Marinol.
With pain destroying our lives, it's important to celebrate the good things, like a 6 year old 6-12 month prognosis.
My daughter turned six back in January and finishes kindergarten in June (and they're having her skip a grade) and I get to see it because of cannabis and my abnormally long survival time.
Pain-Topics.org has removed or moved Overcoming Opiophobia from its server, so bit.ly/Opiophobia is now a dead link. Bit.ly will not allow me to change the url that bit.ly/Opiophobia points to, but since bit.ly links are case sensitive I have created a new mini-URL to link to the file using a permanent Google Docs file. Overcoming Opiophobia is now available via http://bit.ly/opiophobia
I apologize for want confusion that this has caused.