Monthly Archives: March 2015

Pesky Politics: Tricky Words in Legislation

Medical cannabis is definitely a hot topic in the United States this year!  Roughly half of our states have some medical cannabis laws on the books, and 4 have even legalized recreational marijuana!  Wow, you think?  We should have the happiest and healthiest patients around!  Given the percentage of states that have some form of medical cannabis laws, why do Americans actually take more pills than most of the world?  Because many of these laws are symbolic, others are designed to help less than 1% of their populations that need access, and others are so draconian that patients cannot heal themselves.  So as you are watching for your states to legalize, pay attention to these buzzwords/terms!  The presence of these indicate a high likelihood that the law is symbolic or designed to fail!

Where are you getting it????

Make sure the bill introduced allows for your state to produce and distribute the cannabis legally.  Many bills like the one in North Carolina or Montana may allow a patient to possess the cannabis, but they still cannot legally get it!  Keep in mind, those bills say you can get it from a state that allows for out-of-state transactions, but what patient can afford that travel expense?  Also, many states with medical laws don’t allow for out-of-state transactions!  Without a legal means of production and distribution, the law is useless to most patients!  Your state has to have a local program for patients to access their medicine.  Besides, think of the jobs?  You will need an ENTIRE industry of workers!

Only available through University trial studies

This is code word for – you won’t get it.  There are several problems with depending on University studies.  First, cannabis is Schedule I.  This means our government considers it more dangerous than heroin.  Doctors can actually prescribe heroin in certain cases, but can lose their licenses for recommending marijuana to a patient!  Another topic, sooooooooo this status means that any organization in the US that wants to study cannabis has to submit a proposal to 3 agencies.  I believe they are National Institute on Drug Abuse (NIDA), FDA, and the DEA.  (I assume everyone knows the last 2 acronyms.)  Well, the DEA and NIDA very rarely approve of studies that show benefits of cannabis.   Their agencies focus on drug abuse, and both have publicly come out asking why they should approve any other study.  Okay, fine.  Except you are a required part of the approval process whether the study is benefit or harm.  This makes it almost impossible for a University to get approved for trial studies.  All cannabis in these studies comes from the farm in Mississippi, so a University cannot just grow their own legally.   ***IF*** the University does get approved, it takes years to set up the study.  NO ONE is helped by these laws.  Check out the story below about how North Carolina’s laws ended up in this situation.

http://www.wbtv.com/story/28027264/remember-nc-cbd-oils-law-families-say-it-doesnt-work

CBD ONLY

Who is this helping?  Maybe 1% of the patients who truly need cannabinoid therapy will be helped significantly.  Most research shows that the cannabinoids need each other to perform their duties, and those ratios are what needs to be played with!  Even with epilepsy patients, very little respond to CBD only.  It is a learning process like any other.  With any disease, you try to find the right combinations of medicine, diet, and lifestyle.  Each strain of cannabis is a different medicine with a different effect.  We should be able to find the ones that work for our particular illnesses.  While these laws are a start, they truly don’t accomplish the purpose of the bill – to help end patient suffering.

No time frame limits on setting up a distribution/patient access program

This is another clever way that politicians can trick you into thinking you have passed awesome legislation!  So you looked and your bill outlines production and distribution!  YAY!!!!!  Or so Illinois thought!  Their legislation passed several years ago, and as of this writing – NO DISPENSARIES HAVE OPENED.  Only now have patients started receiving their licenses.    It was almost like the legislators never expected it to pass, and therefore never set up any framework for patient programs.  The last several years, politicians have bickered over the nitty-gritty while patients still have no safe access to medical cannabis.  Soon I hear, but make sure that your legislation provides a time limit before the programs must be up and running!

If any of these things appear in your bills, know that you have been tricked by your politicians into thinking you helped people!  Hold your representatives and elected officials accountable and call the news!  The more people are aware, the better!  Few know how difficult it is to research cannabis, few know that the universities aren’t required to set up trial programs, few know that the CBD isn’t so effective without THC!  Unfortunately the only way to truly end the war on patients, is to fight these symbolic laws and let the public know that patients are still untreated!

Year of the Flower, part 2 – Nitty Gritty

My last blog entry was a bit rushed, because I had to leave for some mind work!  When we left off, I was excitedly letting you know how I had dropped 60 pounds and was off 7 of my prescriptions!  Well, here is part 2 to that installment – specifically dealing with the nitty-gritty.  This has truly been a tremendously wonderful experience, but there have been a few negatives.  As a patient mentoring other patients, I feel these points need to be made as well!  Switching to cannabis has been quite a chore and honestly a pain in the arse at times!  Here is why! **Keep in mind, this is from a strictly patient perspective.  Rec use doesn’t have these issues associated with it!**

1. Cost.  Unless you are growing your own or replace at least 7-10 prescriptions, this is going to cost you more.  Unfortunately, the Federal Government’s prohibition of even medical cannabis has caused pricing to be outrageous and mostly unaffordable for the sick.   At about $40/7 grams (a week supply for the average patient, it becomes expensive.  Keep in mind that many patients treat with several types of strains, and this adds up.  If you are a severe patient like me, then you might require more or even concentrates.  SUPER $$$$$$$! Right now, insurance covered pharma is cheaper.  However, if you are uninsured anyways – this is cheaper than buying the pharma!

2. Finding your strain and dosing is a pain in the arse.  Yes it is.  Holy cow!  I really wasn’t sure I was going to make it off opiates because of this!  For the first month, every strain I tried made me feel worse!  It wasn’t until I magically came across the Alien OG, that I actually started to think this could work!  Your body’s need for cannabinoids change as well, which means you also have to switch up your strains every now and again!  All of this is trial and error.  Very few websites do purely medical reviews of cannabis, so in order to gauge a reaction – you have to sift through all the rec reviews.  Unfortunately, most rec reviews only talk about the buzz and most reviewers don’t know much about medical needs.  For me, I am a solid indica girl.  Sativas make me jittery and cause my bone pain to increase!

3. Overcoming the stigma of using cannabis consistently as medicine really was a big deal for me – bigger than I wish it was.  Overcoming all that propaganda and that “I am doing something SO wrong” feeling took months, which means I didn’t get relief for months.  We have teens , and I didn’t want them to mistake medical use for recreational use.    For this reason, I never really used it except at night and sparingly during the day.  Finally, I became more comfortable with it and saw that the kids truly did understand.  Thankfully, these kids know how sick I am and saw the issue those opiates caused.  No one wanted that and they have been incredibly supportive.  Hopefully, this next generation will see the truth and change what we have not.  Since being here, my kids have seen me get exponentially better – something my kids didn’t think was going to happen!

4. Traveling.  I cannot travel with my medicine, unless I am in Colorado.  This sucks badly.  Cannabis has replaced so many medications, that any vacations I take will actually be spent high on opiates, rather than functioning on cannabis.  I can go to some states (like CA and AZ)  and get a reciprocal license, but that is also costly and a pain in the arse.   Until cannabis is treated like opiates, then travel isn’t practical if you are a cannabis user.  Yes, I know you will say – do it anyways!  Well, have you seen the Colorado license plate profiling?  I am already sick – I don’t need jail time!

5.  Doctors are still scared of the DEA and not willing to look at science.   Many doctors (covered by insurance) won’t write for the recommendations because they are afraid of losing their DEA prescribing licenses!  This means it can cost upwards of $100 just to get a recommendation to be a cannabis patient simply because you have to see a special doctor.  Nucking futs.

6. All the federal/state scrutiny and rules.  To legally be a patient, you have to get background checks, submit to a state registry, your consumption is regulated differently than meds, and you have tons of hoops to jump though.  For instance, my renewal application was just rejected because of the form of ID I used.  Sent it in with my passport, and just got a note back saying I need another ID.  Well, I could have sent my license, but it said passport was fine!  HOLY SHIT TOO – IT TOOK THEM ALMOST 60 DAYS TO TELL ME THAT.     But it is what it is.  Good thing it is legal anyways!

These are some of the more annoying points to being a medical cannabis patient.  While I would still chose cannabis over anything else right now, it is a process to go this route.  My results have certainly been worth any heartache, and I am working on developing a green thumb to supplement my intake.

The Year of the Flower

This has most definitely been the year of the flower in the United States!  Just this last election, 2 more states and DC legalized cannabis consumption for those over 21.  CBD was given “orphan drug” status by the FDA to treat glioma (http://www.zacks.com/stock/news/145191/insys-therapeutics-cannabidiol-gets-orphan-drug-status), and the government “says” it will stay out of our medical marijuana laws.  People are fleeing their home states and becoming “refugees” for this flower, and more citizens are getting fed up with the side effects of their pharma.

Change is never easy, but I can really feel the change in the air!  People have been messaging me constantly since I began my journey – people I would have never guessed would be interested!  There is a general unrest among patients that I am very happy to see!  They are learning, and finally from other patients!    (Not that there is anything wrong with the counter culture, but I personally could care less how “high” the strain gets me, I want to know if it will help my neuropathy.)  This is exciting shit!  (Sorry for the language, but it is truly that exciting!)

So let’s recap my year.  In February-Ish, I said “screw it” to opiates.  Finding the only ones I can take became SUCH a chore, it wasn’t worth it.  Going through withdrawal every month is not an option for me, plus that sucks balls badly.  (Yes, I am feeling snarky today – you are warned.)  My ultimate goal was to get off the opiates, and see if it helped the disease any at all.  You hear so much propaganda from both sides of this issue, and it gets really hard to cut through that cheese.  So experiment it was.   When this started, I was not sleeping more than 2.5-3 hours a night, and only every other-ish night – with spells up to 7 days.  My bottom BP # was almost always 95-115.  I weighed quite a bit and was in a size 18.  Walking was a weird hobble and could not persist more than 200ft. before I had issue.  Last winter I was so tired, I basically hibernated – getting tons of concerned messages from friends and family.  Soooooooooooooooo………where am I now?

1.  I am not in remission.  Just incase you didn’t read that – I AM NOT IN REMISSION OR EVEN CLOSE.  I truly don’t want anyone to think that I am miraculously cured.

However, and that is a HUGE however – I can now occasionally actually take advantage of our park systems and go for wooded hobbles lasting some time!  Granted, I can’t really do much the next few days – but I am at least back to that point!  It is very depressing and degrading to someone so young to be SO VERY NEEDY AND DEPENDENT.  Y’all have no idea how HUGE this truly is.  I enjoyed Arches National Park and the Grand Canyon some last year!  HOLY SHITBALLS!  This is the first summer I have been able to exist outside air conditioning in over a decade, and my mental health is so much better.  I fade the moment I can’t go outside.  Huge.

2.  Medications……..ahhhhhhhhhhhhhhhh the truly evil little bastards we have this amazing love/hate relationship with.   The roids, the nauseatingly obnoxious chemos, infusions, shots, and still PILLS!  I was on Actemra, zoldipam (Ambien), arava, oxymorphone, oxycodone, gabapentin, lisinopril, and coreg.  I was a higher dose opiate because, for me it has to be strong enough to stun Jabba the Hut to work.

Now I take Actemra, tramadol (for sleepiness mostly), and cannabis.  Yep – you read that right!  We just lowered my infusion almost 200mg as well!  (That was due to weight loss though.)  I would say this is a FREAKING AMAZING improvement!  My RA is now in the mild category, though my damage will keep me in severe forever.   Y’all, my RA has never been mild, except a brief period in my teens.  If I didn’t have the damage I have, I would be running and have actually TAKEN OVER THE WORLD.  Sorry, yes my plan is to take over the world and be known as Supreme Overlord, but was thwarted by these silly autoimmunes.  (Joke for those of you with no sense of humor.)  This winter has been tough, but not nearly as tough as last winter – and we have had more weather this winter!  My issues this winter are germs mostly, and the onset of a snowstorm.  Those hurt, but nothing like hurricanes.  More like thunderstorms, or pressure changes.  Even when those come, there is less humidity here than on a normal day in GA!  Snowstorms will cause me to medicate highly and watch documentaries.  Last year I actually binge watched several TV series, and multiple seasons at that!  Dr. Who, American Horror, “Ancient” anything, and every series History had to offer.  This year, I have binge watched an off-grid YouTube series.  That is it.  I haven’t even made it half way through that!

This winter, I have baked craploads of bread and finally learned how to consistently make effing bread.  It was my baking nemesis.  Yeast breads befuddled me, but not anymore.  My grandbebe and her parents moved here this past November, and I have actually been able to watch her a good bit!  Would not have happened last winter, unless the grand liked History channel.  My hind quarters were attached to the couch – and this is during my “afraid to get stoned in front of my teens” period.  Once that ended though, I improved rapidly.

3.  Weight………So rapidly in fact, that I have lost over 60 pounds since last year.  OVER 60 DISEASE ENABLING, ARTERY CLOGGING, MOBILITY STEALING, MEDICINE CAUSED POUNDS.  Gone.  Poof.  Wasn’t trying and actually feel like I have eaten worse.  Sort of.  Grain free, Paleo, and gluten free did not work for me for some odd reason after 7 years, so bread made its way back into our house.  This is all organic and homemade though.  Hence being able to learn to make it.  While I never eat a lot, a bite or two happens.  No, I don’t feel guilty, and I feel better – though cause has yet to be determined.  Why did I lose weight, and more pressing – HOW did I lose weight with munchies and on cannabis???!!   Anyone who has been on opiates, knows they stop your digestive track.  Not just slow it – just stop that sucker like an Atlantan on an icy I-285!  Your function just abandons that shit and walks home!  So naturally, I lost weight when my belly went back to normal.  Took roughly 8 months to get back to how it was before the pain meds.  Now I am so nauseated as a norm that the cannabis fights the nausea, rather than giving me the munchies.  ***Some strains induce munchies like a zombie virus outbreak at Dragon*Con, so beware.  Any of the Sweet Tooth and children of her get me…..every time.

So all in all, this has been a pretty flipping awesome year in the autoimmune realm….well, in all realms actually.  Going to wrap this up, as I have to make meditation.  Ciao bellas.  Will write more later.