All posts by gangaautoimmuner

About gangaautoimmuner

I am a life-long autoimmuner with several autoimmune arthritis diseases like RA, Lupus, Sjogrens, and Raynaud's. I have 3 children, one granddaughter, an amazing husband, and several rescued cats.

I Swore in My Doctor’s Office Today

http://kubalak.com/wp-content/uploads/2012/01/Swear1.jpg
Picture taken from http://eclecticdad.com

 

Yes I did.  Fucking too.  I said fucking, which is VERY rare (except in my head).  Now before you start thinking this isn’t a big deal, I don’t swear a lot.  Grew up Catholic and still won’t swear around my parents.  I am also patient – to a fault (my ex is an alcoholic and we were together 12ish years, I waited until my bones were dissolved and almost unsavable before going to the surgeon, I didn’t get loud enough with my knee surgeon, I can go on).   It has to stop.  One has to be realistically patient, but there are times a full on fucking tantrum is not only acceptable, but needed.  Here is why, and it will not include the story of today since I am still with that doctor.

Bad Record Keeping

This is huge.  I dare you to go get your medical records.  Do it!  You won’t get the results you expect, especially if your physician uses electronic record keeping.  I experienced this MULTIPLE times in Georgia, and with one of the “best in the state”.  The highlight of it was when I was injured and had knee surgery.  The surgery didn’t have the expected positive outcome, and I needed longer opiate care.  My surgeon called and spoke with this doctor every month, and sent written letters.  I also was in there – specifically to document the bad knee and that this wasn’t RA related!  She did not keep the documentation on the opiates, so when the pharmacy called about the prescription – she claimed she had no clue what was going on.  Now, I was in the week before SPECIFICALLY for this issue and documentation.  My knee documentation was in there though right?  Nope.  There were a few things, but not the majority of the issues.  When I got the call from the pharmacy, I even brought them AND this doctor the documentation she was lacking (from the surgeon), but she refused to take it!   I was livid, so I got a copy of ALL my medical records and fired her.  This is why we are being targeted by the DEA folks!  My doctor’s lack of record keeping could have resulted in something very serious for me, and I know I was not the only one in that boat.  Thankfully, I kept records and now I keep my own medical as well.  I get copies of everything before I leave the office.

Too Many Patients to Care

Yes, most doctors are good people who truly care about their patients, but not in an “I know you as a neighbor and human” care.   I know this sounds mean, but when your doctor has so many patients, it is impossible for them to deliver that gold standard of care.   The practice becomes more about numbers than people.  Wait times to get into doctors that only see you for 15 minutes are atrocious.  Generally, you can get a thorough check on your first visit, but after that – nada.  You become very numerical.  Ever have a physician see you get worse, yet keep you on the same treatment for over a year?  I had one that would talk about switching things around for over a year, but again never document anything.  When I asked the office staff or a nurse, the usual response was “let’s wait until the next time I see her”.  I actually got to the point I stopped ordering Remicade, because the drug was no longer working and I wasn’t paying that much for nothing.  When I did that, the doctor’s office ordered it without my authorization and it was charged to my card.  Needless to say, that was also stopped immediately after a tantrum with both Aetna and their office.  That did, however; finally get her to switch me to Actemra.  She had so many patients that the average wait was 2.5 hours to even get in a room, so the documentation was something that never happened.  That causes my next issue.

Autoimmune Marginalization

Most doctors are trained without the current research, and most of the symptoms associated with autoimmune diseases are still scoffed at.  We are the “too sick, but not sick enough” to matter in society.  We don’t look sick (most of us), and we aren’t going to necessarily going to die soon.  I truly believe a lot of our doctors buy in to this mentality.  Many rheumatologists don’t  consider autoimmune arthritis potentially fatal, and others don’t even recognize certain organ involvement with ones like RA.  (Despite the extensive documentation.)

I am always shocked at my doctors reactions as I tell them my symptoms.  Every single one seems utterly surprised that I have the issues I do.  Surely, I am not the only person with dissolved bones, organ involvement, muscle seizures, etc.  I cannot be the worst or even close!  Judging by the groups on social media, there are many more like me!  So why the shock and awe every time they see an MRI or x-ray?  Because they don’t believe we hurt or feel THAT bad.  The doctors have marginalized our symptoms and are treating only the squeaky wheels.  So time to be a fucking squeaky ass wheel and unleash some “bite-chas”!  I stole the “bite-chas” from an awesome friend!

Tantrums Can Be OKAY

While I do encourage you to be patient and always use kindness (I did not personally insult anyone today), there are definitely times you need to let that dragon out.  We are also allowing them to get away with these things otherwise.  No one wants to be angry, heck it uses MORE spoons than I get in a month – but I am done being nice.  I am done waiting until something is broken beyond repair before I push to get it fixed.  I am just done with people screwing up my health.   I always wonder if I had started Actemra earlier, and at the right dose (another issue with this doctor), if I could have avoided some surgeries.  I wonder if I wouldn’t have lost so many knuckles had I gone to my hand surgeon sooner.  (Best hand surgeon EVER actually.)  This also means I need to get my undiagnosed, diagnosed, my knee looked at, my back xrayed, and my feet xrayed.  So this will be a “hear me roar” year for all these doctors involved.  I somehow sense several tantrums and some “difficult patient” labels.  Bring it.  This may not be the last time I swear at a doctor’s office.

Finding an Autoimmune Friendly Career

Market at Campo De Fiore in Rome, Italy. No where near my house, but it IS a farmer’s market!

 

Lately I have been much better  physically and have been considering going back to work part-time.  As Autoimmuners, it is very difficult to find a job flexible enough to cope with our ever-changing bodies, and management that will be supportive.  From day-to-day, flares come and go limiting our activity levels dramatically.   While I am feeling amazingly better than I was living in GA, I am still flaring and dealing with significant pain levels.  (After so many years, the damage is permanent regardless of the level of disease activity.  My disease activity is mild right now, but my damage is severe.)

Over the years, I have had several types of jobs ranging from optics to herpetology and pizza maker to educator.  Every career I start, I know isn’t going to last.  Any repetitive movements dissolve bone super quickly.  A few years ago after my knee injury, I tried to learn SQL and PHP.  I started a course in May, and by October my knuckle was eroded so badly it almost could not be saved.  I had it replaced, but lost all the length off that finger.   As an educator, I landed a knee injury after being wrongly placed in a severe autism room.  I loved those kids, but had restrictions on file.  Within a month, I was injured and needed a new knee (that was never fixed properly.)   So we have to be careful.  This isn’t as cut and dry as it looks!

Employers also do not want to hire sick people, and who can blame them?  If a healthy person is guaranteed to be there and be productive, why would you want someone who you KNOW is going to be sick?  Sadly, losing the ability to work a “normal” job is one of the most devastating experiences an Autoimmuner can go through.  It causes so much emotional grief and distress knowing you NEED someone else to take care of you.   What if there is no one there?  What if that amazing spouse gets sick or worse?  Lately, it seems many Autoimmuners are in that position.  Our diseases are not perceived as “bad enough” for community compassion, yet they are so bad that we cannot operate like every one else!  So what are we to do??

Being home working on my mobility has allowed me to pick up some new skills like bread, jam, and body care product making.  I have been considering working some of the local farmer’s markets here to see if that avenue would provide some extra income!  I am not sure how my body will cope, or even if it will do well – but I will be documenting the experience for y’all!  I have also considered setting up an Autoimmuner Business Exchange where those of us with crafts (etc.) can peddle their wares!  I am finding that the ONLY way to continue a career, is to diversify what I do in order to preserve my bones.  Besides, I don’t think we can count on Social Security OR the compassion of the community anymore.  We need to work together to lift each other up so we survive!   So fingers crossed that I can set up a small business that will do enough!  Ultimately, I want my husband to retire in his 50’s.  He is a former Marine that has served his country and our family well.  Without his support, I really would be so lost.  I need to contribute and make this dream of his come true.  He does so much for me and is so patient – even when I am prednisone grumpy!  Wish me luck!

Life Lesson #3 – leaving “human” in “humanity”

This tree made me push further. It is amazing how life can live in with such burdens. Like Autoimmuners.

 

The expression “to be human” or “only human” means that we show faults and vulnerabilities.   Some of our greatest strength and beauty is exposed during these times, yet lately the world’s people seem to be forgetting they are human.  Whether the labels are: gay, black, white, Christian, Muslim, or disabled – they are certainly flying with frequency.  Every time these are thrown out at someone, we see less of a human and more of an object.  This works both ways too!  As disabled people, I hear a lot of us griping about healthy people as if they were one annoying object.  They are our friends and family, neighbors, and not all are insensitive gits.  This extreme grouping/labeling thing crosses all boundaries.  Society is taking the human out of humanity and imposing the mentally constructed perfection on everyone else but themselves.

Why do we expect and accept this unattainable concept of perfection/normalcy?  Looking around from day-to-day, it seems that no one is the same.  Even the same person is different from day-to-day.  From minute to minute the weather changes, the river water is never the same water, etc.  See?  We can go on and on with examples.  So I think it is safe to assume the same concept applies to humanity. No person is the same, no one processes experiences the same, and no one has the same chemicals or experiences as the next.  So why then, do we use such a cookie-cutter approach to determining self-worth?

All these pains and issues will eventually happen to someone, whether by disease or age.  Everyone will eventually end up dead.  So why waste time bickering about things like: disease, sexual orientation, religion, and color?  (Just to name a few!)  It cannot be so hard to accept that some people seriously do feel legitimate pain worse than you may never know, that you condemn and marginalize those who feel it!  This concept applies to SO many things, and truly can be very spiritually liberating.  What does it matter who one loves, what they look like, or if they can walk!

When we start separating everyone into groups first, we train our minds to see that first.  We no longer see a human in front of us, we see that label.  Let me stop for a minute to say this,  labels are necessary.  They can describe us, explain things, and offer a lot of information.  It is all in how we use the labels, and react to hearing those labels.  When the labels start to polarize and illicit fear, then we have an issue – like what has been happening in the US and all over the world.  Let’s use an old example to illustrate this.  The Romans!  YES!  Those plucky Italians conquered the world, and wrote history.  Ever hear the word vandal?  What about barbarian?  Uncivilized?  Yep.  They used labels and ended up suppressing half the known world, to the point we still believe what the Romans wrote despite contrary evidence.  (Now would be a great time to Google Terry Jones’ series on Barbarians if you are lost.  It is good stuff, and Terry Jones!)  It has been a couple of millenea, so why are we acting like the Romans still??!!

So life lesson #3 is to keep the human in humanity.  Remember we are all imperfect beings, and the constructs of perfection are not reality.   Next time you see that person in the handicapped spot who doesn’t look sick, automatically assume they are an autoimmuner.  Don’t assume the homeless man can “get a job” or is using $ for drugs.  See yourself in others and put yourself in their situations.  As individuals, we like to think we are immune to certain things, when the reality is – we are always walking a fine line.  Things are always changing, and what is keeping you alive right now may not the next.  We are always having lunch with the Grim Reaper.   Always treat others the way you would like to be treated in that situation.  Never assume the worst.  Train your mind to assume the best.  Keep the HUMAN in HUMANity. 

From Pharma to Canna: Painkillers

A lovely plant from my garden last year.

 

Making the transition from pharma to cannabis was not an easy process, albeit very worth it!  There were many times I actually didn’t think I could make this transition.  Several obstacles have to be overcome when transitioning from any synthetic medicine to cannabis, including: finding your strains and dose, deciding on a method of delivery and adjusting to the nuances of said delivery method, and clearing the brain of any canna-propaganda.  In addition, you have to anticipate the flare that will come.  Any major trauma is going to cause the body to panic  and set up the potential for a flare.  During this process, I virtually withdrew from my friends and I could truly only focus on just existing.  Withdrawal and weaning are not fun processes.  Fortunately, I had no choice.  The only opiates I could take with out reaction were on the DEA’s hit list so they suspended shipment.  For that story, see this.  So know this will not be a cake walk, and be okay with that.  As with everything, we have to fight and figure this out for ourselves.  Being a stubborn horses arse comes in handy here.

You will need patience and realistic expectations.

You are on opiates which are going to cause withdrawal.   This means that even with your best efforts, you will still feel like absolute poo until this process is over.  My best advice is to keep your eye on the prize, and keep your expectations tempered.  Cannabis is amazing, but it is a process and medicine like any other.  Very few make this transition with no bumps.  I almost gave up completely a few times, because of the fatigue and flaring.  Withdrawal is worse than having the flu and it causes everything to amplify.  Keep in mind that during this process, you are also trying to establish your dosing and strain needs.  You will feel like absolute crap.

Weaning is a slow process.  Depending on things like: how long you have been on opiate therapy, your body chemistry, and which meds/dose, this process could take over a year.  Mine thankfully was only a few months of withdrawal (5 roughly), but my body is still adjusting to this.  While, I no longer have the flu type withdrawal symptoms – I still randomly have muscle seizures and my body still seems to be adjusting.  It has been over a year.    **If you are seriously going though withdrawal – raise your dose or get medical treatment.  THAT IS OKAY.  I had to do that several times, especially right near the end of my opiate use.** You will have to bounce your dosing back and forth depending on symptoms.  Going back up for a bit is OKAY, so don’t feel defeated (I sure did!)

Often we also tend to set our expectations way too high.  We have autoimmune diseases folks, and true remission is rare.  Clinically controlled autoimmuners still have pain.  You will still most likely not be pain-free.  Kudos to those who do achieve that, and honestly we always fight for this.  To our detriment we often expect our medicines to perform miracles.  If my autoimmunes disappeared today, I have a crap load of permanent damage that I will never get rid of.  I will never be pain-free.  Haven’t been in almost 30 years.  Can’t even remember what that is like.  I am okay with that, and just trying extend what I have as much as possible.  No, I have not given up the good fight.  Quite the opposite actually, but in accepting reality for what it is (while keeping the hope alive but tempered) has allowed me to LIVE my life and enjoy what I can do.  I know everything is not permanent.  This run of better mobility will eventually end, whether via age or disease.  So enjoy your life, despite your autoimmunes.  I truly believe this is the biggest FURA one can send.  Just don’t expect to magically be able to hike Pikes Peak or skydive.  Take your time and recover, but know it takes time.  Stay positive.  If you expect certain bumps, the ride is easier to get through.  (Especially if you are strapped in for it!)

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How to avoid overdose – Take it slow.  If you are new to cannabis or it has been a while, listen up.  This is the section you need!

Inhaled medicine is going to kick in quicker, but not be as strong or long-lasting.  Take a hit or two then stop.  See how you feel 15 minutes later.  Some strains are creepers, which means the effect will slowly creep up on you, rather than being immediate.  Here is a link to information on flower as medicine.  Edible medicine is like extended release opiates.  START SMALL.  JUST INCASE YOU DIDN’T SEE THAT, START SMALL.  Edibles can take up to 2 hours before they start taking effect, depending on your metabolism.  If you eat more than your dose, you will be miserable and possibly do something uncharacteristically stupid. For an article on how to use edibles, click here.   Concentrates are what you move up to when the rest doesn’t cut it, and are unchartered territory for me.

Signs to watch for – Be mindful of your body.  Cannabinoids affect everyone differently.  If you feel your heart racing a bit, go more indica.  You may need more CBD or other cannabinoids like CBN.  If you feel too drowsy, maybe head towards the sativa side.  Know you seriously do want to have CBD in your life.  autoimmune arthritis does its damage via inflammation.  CBD is anti-inflammatory.  Your THC can be adjusted based on your needs, so be mindful of the general make up of each plant.

Don’t do cannabis alone the first time.  It is easier with someone there to reassure you and make sure you don’t go nuts and eat a 100mg edible on your first go.  Once you know what to expect – no problem.  If you ever question your health or are with someone who is disoriented, please take them or go to the hospital.  Most people seem to be heeding the warnings of budtenders and labels, but a few have not and had fatal accidents as a result.  While you cannot die from a THC overdose shutting down your body, it can disorient you enough that you do something absolutely insane like jump off a balcony or shoot themselves.  Both of those have happened here, and I can only think these poor guys would never have done that otherwise.  Unfortunately, the budtenders are meticulous in talking to tourists about dosing and the packages are labeled.  Heed the warnings please.

Hopefully this, and the links within will help you decide if this is the right path for you, then help guide and inspire you.

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.

Urban Legend – Strain Review

Type:  Urban Legend, hybrid

Uses: moderate pain, muscle spasms, nausea, stiffness, nerve issues

Medicine Replaced: flexeril, muscle relaxers, NSAIDS, promethizine, gabapentin

Smell:  This strain smells more like hay with a nice hint of pinesol.

Commentary:  Urban Legend is a mild to moderate hybrid that I use for daytime muscle pain.  It seems to work well on some of the deeper pains, but doesn’t give me couchlock.  I would not use this for severe pains or anything that NSAIDS wouldn’t knock out.  It does relax the muscles more than other strains though.

Patient’s Can’t Wait for Isolated Cannabinoids

Earlier today, someone posted an article from the blog Science Based Medicine.  It very nicely points out the struggles people are having when justifying medical use, and exactly how to earn legitimacy.  It also showed there is a need to explain WHY medical cannabis is a viable therapy right now, and MUST be made available to patients.

Many groups tend to overstate the known facts on both sides of the issue.  The cannabis haters often argue that there is no science, addiction possibilities, and looming rises in teen drug use. However, the pro-cannabis lobby seems to do the same thing.  This usually means the truth is somewhere in the middle.  For instance, dealing with the cancer curing properties of cannabis, basically what we have is a luminous lump of anecdotal evidence and some highly suggestive studies.  The article states,  “They’ve done so [legalized medical cannabis] on the basis of a political movement among patients that make pot sound like a miracle drug that can help when no other intervention can.”   This is very true.  Cannabis is being touted as a miracle drug for many conditions including autoimmune issues, cancers, and epilepsy.   The touting, in many cases, is because cannabis has helped when nothing else did.  Granted, the legal status of cannabis makes it hard to do ANY positive research on it.  One cannot clamor for science when it is impossible for the science to happen!  Most medical cannabis advocates truly do want this studied in its entirety!  Isolated cannabinoid therapy may help many people and cannot be ignored!  But science takes time.  Even if we got cannabis rescheduled today, it would be years before any results would come.  The author goes on to say, “If marijuana is going to be approved for use as medicine rather than for recreational use, however, the standards of evidence it must meet should be no different than any other drug, and for the vast majority of indications for which it’s touted medical cannabis doesn’t even come close to meeting that standard.”   This is something I seriously disagree with however.  If “science” cannot provide a viable option, then it must yield to what exists.  While cannabinoids need to be studied and isolated (there is a need for pharma), patients cannot wait for science to catch up.  Until science has a better solution, medical cannabis needs to be available to those who need it.  (Honestly, even after science’s solution, people need access to cannabis period.)  Unfortunately, I feel “science” is just as bad as extreme religion when it comes to this.  Since when is science ONLY studying one thing!  Does that mean the study of ecosystems, or compounds is not science since the components aren’t singular?  Science sound like a bunch of witch-hunt Puritans to me.

Sadly it also appears that the author isn’t familiar with Sativex.  It is a measured dose of standardized, whole plant cannabis extract.   The only reason it is unavailable in the USA is because of legal status.   Marinol is also isolated, synthetic THC.  So cannabis does exist in medicine form.   Not sure why she neglected this science in her article when the author decided to state, “In brief, herbs, when they work, are adulterated drugs. The active ingredient is usually a minor constituent, embedded in thousands of other constituents that make up herbs, and it’s almost impossible to control lot-to-lot consistency with respect to content or active ingredients given how location, weather, soil conditions, rainfall, and many other factors can affect how the plants from which the medicines are extracted grow and therefore their chemical composition. ”   The entourage effect was also not mentioned.  This just suggests that cannabinoids work better with the full host of their constituents.  Dr. Mechoulam in Israel has noted that cannabinoids seem to function based on the other cannabinoids within the profile.  What is “sticky” about this, is the results of isolated cannabinoid studies.  One is clearly going to get inaccurate results unless full cannabinoid testing is done, in addition to isolated cannabinoid studies.

It saddens me to think that so many in the scientific community have completely ignored the evidence out there, compounded with inhibitory laws that has prevented the research into one of our body’s most vital systems.  I think it is fantastic someone did research, but looking at this person’s blog – they also sound like a bitter person who wants to criticize while not offering a solution.  Patients cannot wait.  Since this article was written, the FDA has granted CBD special Orphan Drug status for glioma.  That means the FDA has recognized CBD kills cancer and can be especially effective in brain cancers like glioma.  Sounds like the science must have been there.  Attached are links to the blog in question.  I didn’t respond to the cancer one specifically, since I cannot speak to that personally.

http://www.sciencebasedmedicine.org/medical-marijuana-as-the-new-herbalism-part-1-the-politics-of-weed-versus-science/

http://www.sciencebasedmedicine.org/medical-marijuana-as-the-new-herbalism-part-2-cannabis-does-not-cure-cancer/

Flo – Strain Review

Type: Flo, hybrid

Uses: anxiety, depression, nausea, moderate nerve pain, mild pain

Medicine Replaced: Zoloft, xanex, antidepressants, anti-anxiety, NSAIDS, gabapentin

Smell:  This is a very earthy, herby smell, mixed with lemon.  The initial vape taste was Lemon Pledge then just a culinary astringent herb like taste.

Commentary:  This strain creeped initially, and ended up settling in my head.  A wave of full body numbness set in shortly after, but this was a good type of numb.  Most of my nerve pain went away, though I am still a little head wonky right now.  (Pressure behind the eyes.)  I wouldn’t recommend this for bone or muscle pain, but is a good daytime strain if you are having nerve or anxiety/depression issues.  It definitely is a high-energy, uplifting strain.