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.

Steve

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.

-Steve

Opioid Treatment 10-year Longevity Survey Final Report

Opioid Treatment 10-year Longevity Survey Final Report

http://bit.ly/1aY7slr

-Steve

OT- Banned4Life Project

The Banned4Life Project
www.banned4life.org

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
https://www.causes.com/posts/833577
http://bit.ly/B4Lpetition

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.

-Steve

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

Steve

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

Living with Pain: Handicapping the Disabled - National Pain Report

Living with Pain: Handicapping the Disabled - National Pain Report

http://bit.ly/1ehcPMM

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.

Steve

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.

Steve

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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.

Steve

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.

Steve

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?

Steve

2013 Resource Guide to Chronic Pain Medication & Treatment

2013 Resource Guide to Chronic Pain Medication & Treatment (pdf)
http://bit.ly/1aEeQDO

Steve

Cops force doctors to commit assault

Fuck this War on Drugs and everyone who participates in it, perpetuates it, and/or profits off it.

http://bit.ly/1c04J8Y

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"

Steve

The scary truth about our pain problem - Chatelaine

The scary truth about our pain problem - Chatelaine.com
http://bit.ly/HIOqE7

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

http://bit.ly/HIN1xi