Monthly Archives: May 2014

Autoimmuner Life Lessons #1: Be a stubborn horses arse

To have a bucket list as an Autoimmuner, you need to have several personality traits.  Unlike a healthy person, we have serious limitations that dictate the ability to complete the list.  More so than ability, personality dictates who accomplishes this.  Just the challenges of being sick and living life require someone who is basically a stubborn horses arse.  I am that arse.  So here is my big Na’ smaoinigh fui’oll feisthe a dhe’anamh di’omsa to Autoimmune Arthritis!

Autoimmune arthritis presents a very unique challenge to the notion of a bucket list!  We are all at different physical levels and disease severity.  Unlike a healthy person, we don’t have the ability to do EVERYTHING.  Some get to climb mountains (Jeff G. – Google him!), but a good many of us are past that point in our disease.  That is the one thing I truly miss, and know I won’t ever get that back.  As a kid, I used to rock climb and lived an athletic, outdoor existence.  But, if I focus on this one desire, I won’t get anywhere but depressed!  So we have to focus on what we can do.  I still have a good bit of physical ability.  I am walking (though xrays show I should not be able to), but have a botched knee PKR and ACL reconstruct.  Eventually, I will have to get a TKR to fix it, but now it not the time.  I feel like I just recovered from the PKR.  So my mobility is flat, slow, and short distance.  We also have to consider flares and medication.  Some medicines keep us very close to home, and some even make the disability greater.  Anything we do, must be flexible to accomodate our illnesses.  Even with these limitations, there are tons of things I can do!  Fortunately, I am a nerd with no attention span, so I find all sorts of things fascinating.

Now that I have stabilized a bit, time to get on with living life!  I never created a bucket list because there were so many things I would love to do, that I could never accomplish them!  My philosophy is this:  what ever comes my way, take the opportunity.  It may never come again!  However, these are things I would certainly like to do in this life!

  • Visit Machu Picchu.  I don’t know why, but I really want to see this!  However, I think this opportunity may have passed.  This is the one I will jump at if I ever get a chance.  This would totally be worth the flare and damage!
  • Learn a dying or dead language.  I have always had a fascination with ancient cultures.  Wouldn’t it be cool to learn a heritage language or one that few people know about?  Even better, wouldn’t you love to mess with telemarketers by speaking a language they have no translator for?
  • See all 50 states.  I am actually pretty far into this!  As a kid, my Mum was a travel agent; so we traveled!  I have also lived in 3 states, and 2 countries – so that helps!  I got to see all those neat, free, historical sites all over the east coast and southern border!  Last count, I am on 32!  Only 18 more to see!  The great thing about this one, is it can be done in bite size chunks.  I can travel then recover.
  • A heritage tour.  I would love to see the homes of my ancestors, and my birthplace.  It spans 3 countries, but would be really awesome to see.  My family has always been steeped with genealogy, so I am thankful to know a lot of our history.  This again would most likely make me sick – they all will really – but I would really cherish this experience and memory.
  • Do a zipline.  I can’t skydive, so this is my next best option.  Since my small bones in both hands and feet are hollow, no high impact anything!  This will have to do for this life!
  • Read the Tibetan Book of the Dead.  I have been fascinated by the Buddhist philosophy and this is something that I would love to explore.  In the past, all life was seen as cyclical and that is where I tend to lean.  It definitely helps me cope with the things I CAN’T do a lot better!
  • Learn as much about my new home state as possible.  Just because it is local and something I can do in segments!

 

So that sounds like a good list!  I will edit it occasionally as my attention span shifts, and I accomplish things!  So CHEERS to being a stubborn horses arse.  It is the only way to truly enjoy life as an Autoimmuner and is the first Autoimmuner Life Lesson I can impart.

Blueberry – Strain Review

Blueberry is a daytime strain for the slightly moderate symptoms.
Blueberry is a daytime strain for the slightly moderate symptoms.

Type: Blueberry, indica

Uses: muscle spasticity, minor headaches, barely moderate pain, nausea

Medicine Replaced: zofran, muscle relaxers, tramadol

Smell: This strain does have a light scent.  Smells like the peels of blueberries taste with pine undertones.

Commentary: I wouldn’t use this for insomnia, but it is for slightly heavier mildish pain.  Not a heavy strain at all.  After 20 minutes, I was functioning clearheaded.  This is a great daytime strain for when you needed something stronger than naproxen but not as strong as hydrocodone.

Waltz – Strain Review

Waltz is excellent for mmoderate pain and symptoms!
Waltz is excellent for moderate pain and symptoms!

Type: Waltz, indica dominant hybrid

Uses: moderate pain, moderate nausea, muscle spasticity, spasms, headaches, migraines, insomnia

Medicine Replaced:  zofran, hydrocodone, oxycodone, muscle relaxers, sleep aids

Smell:  Smells like an OG indica with a strong, earthy smell.

Commentary:  Similar in effect to Northern Lights for me.  I found Waltz very helpful on days that were a bit rough.  I would add it to my CBD strains and use it in the late afternoon after my aches were going good.  Worked wonderfully, and if you aren’t me – it would be a great one for insomnia.  I need things that stun mules.

Chem Dawg – Strain Review

Chem Dawg is a very light daytime sativa great for mild symptoms.
Chem Dawg is a very light daytime sativa great for mild symptoms.

Type: Chem Dawg, sativa

Uses: mild pain, mild nausea, minor headache

Medicine Replaced: promethazine, ibuprofen, naproxen, aspirin

Smell:  This has a light, chemical smell to me.  Definitely smells sativa!

Commentary:  Chem Dawg is for minor symptoms.  It gives me a light head buzz for about 30ish minutes, than my head clears nicely.  Last time I used Chem Dawg, I cleaned the kitchen after vaporizing.  This is not good for anything stronger than OTC meds could handle, and definitely a daytime strain.

Reflections of a newly weaned Autoimmuner

One year ago next week, I made a 21 day journey from Atlanta, GA to Colorado Springs, CO. and back.  My family had the opportunity to move and we had to jump.  During that time, I found an awesome house that would prove to be a phenomenal choice, hung out with my West Coast Mum (yes I have 2 awesome Mums on both US coasts), and lost 15lbs.  We moved because my lupus was flaring and getting worse, and the quickest solution would be to flee the humidity.  We were medical refugees in a sense, but not for cannabis – for weather.  During the 21 days I was here last May/June, my RA symptoms disappeared mostly.  In almost 30 years of diagnosis, that has only happened when I was in the Mediterranean.

Coming here, my medicine consisted of Actemra 360mg (biologic), Arava 20mg/daily (YAY CHEMO – insert rolling eyes here), 60mg Opana daily (oxymorphone), 30mg oxycodone daily, 4 Immunoguard daily (natural supplement, saved my lungs), 24mg Zofran daily (nausea),  1200mg gabapentin daily (nerve issues), lisinopril 20mg daily (BP), and 50mg Coreg daily (tachycardia).  My sleep pattern was anywhere between 90 minutes and 3 hours of sleep every 3-4 days.  I was literally a zombie.  There were times I didn’t sleep for 7 days straight, and that was a regular occurrence.  My lupus had started to show its ugly face 4 years prior and my lungs, heart, and kidneys were really damaged.  We were hoping for a miracle as far as my health went.  In addition to the stress of traveling, living in a hotel, and preparing to move, we had many other major stressors.  When I returned from the last of the major trips in January, 2 last key body traumas hit.  The boys were sick, and NO pharmacy had my Opana.  Opana is oxymorphone and when abruptly stopped can cause seizures, respiratory arrest, and cardiac arrest.  Not good news for a Lupie with uncontrolled lupus.  I ended up running out waiting for a refill, and turned to the newly legal cannabis.  So this all started by accident!

Sadly, I can say that my views on cannabis were still strongly shaped from my experiences with the illegal market and propaganda.  That night, the cannabis actually didn’t help the withdrawal, and it was a very long night.  I was able to get my medicine two days later, so the cannabis went on the shelf.  I did try it both nights though, and the second night (I found a hydrocodone we had so no severe withdrawal) I slept like the dead.  I had not slept that good in YEARS.  YEARS!   But, I was worried about my teens, being perceived as a pothead, and all sorts of crazy things.  Cannabis is an illegal drug, and people go to jail for that!  So like I said, the pot went back on the shelf for another month.

February brought the same issue with the Opana, only this time it wasn’t being shipped to the pharmacies.  I had to drive 60 miles, only to find half my prescription.  That was the last straw.  I was so sick of having to constantly call my doctor and ask for alternatives because I could never find this stupid medicine!  So I started to read.  Bare minimum, the cannabis helped with the insomnia, so I talked with my husband.   Then I talked to the kids.  Medical use is something that really can’t be hidden, so I opted for a more open approach.  By then, I had read 3 books on medical cannabis and done my homework.  For me, this was an opportunity to educate as well.  Last thing we need is more kids growing up with the blatant false propaganda!  Teaching moment!

The process began.  I was so skeptical.  The cannabis I bought at a rec store actually made my bone pain worse, but there was one strain that worked OKAY.  Just okay.  Went to the same dispensary (rec dispensaries have different stock/rules than medical) and got more of a mixed strain and still not great results.  But I was sleeping.  That made such a huge difference in itself!  Finally, I made my way to the rec store (60 miles from my house) where I found Alien OG and Cannatonic.  That was the turning point and around the time I started my Facebook page.   These first 6-8 weeks were very iffy.  I had a hard time adjusting to the concept of medicating with marijuana (only gets you high right?) and had to find my groove whilst in flare and withdrawal.  Balancing that sucked honestly, and I did almost give up a couple of times.  But once those 2 came in, the game changed for me.

Alien OG was the perfect sleep aid.  Yes it was strong, but Ambien makes people sleep function.  Yeah, I think I will deal with stone.  (insert smirk) I slept like the dead and woke up completely refreshed for the first time.  This strain not only cured the insomnia, but didn’t give me a morning hangover!  This is the point in the story where the clouds part, the rays of sun single out the Alien OG, and there is a heavenly chorus.  Fantastic!  Now for the Cannatonic!  With kidney issues, I can’t take NSAIDS anymore.  Well, Cannatonic is a 1:1 THC/CBD strain used as an anti-inflammatory!  YAY!  Vaporized it and waited.  Mild buzz for 10 minutes, then went about my day.  I had found some base strains that actually made me feel better!  Not stoned, not filled with munchies, but my pain dulled!    This is definitely not your hippie’s cannabis!  This is when my experiment began in earnest, and I had hope it would work.  I got my medical license and things completely changed!

This story began in January with some serious pain, flare, stress, and fear.  It is May now.  Today is day #3 COMPLETELY WEANED OFF ALL OPIATES.  Let me say this again, just incase you didn’t catch that – I AM COMPLETELY OPIATE FREE FOR THE FIRST TIME IN 5 YEARS!  No withdrawal anymore, no excess pain, and I am sleeping.  Looking back, this was a very difficult adjustment.  There were times the withdrawal was bad and I had to increase my opiate use occasionally.  There were times I felt this was never going to work and I had too much damage to ever be off opiates.  There were times I had to reconcile that I was sitting in my space, vaporizing marijuana while I have 2 teenagers in the house.  All of those things had to be dealt with while finding my “right” combo of cannabis vs. pharma.

Flip side – even if it takes you a year, this is worth it.  Let’s be real here.  As Autoimmuners, we know there is a terminal side to these diseases.  We know that eventually we will need these medicines, and they do have a valuable place in this world.  No one should ever be treated like an outcast because they need opiates.  I could not imagine having to deal with some of this disease without them.  This whole weaning issue would not be possible had I not moved.  BUT, if you can manage it and live in a medical cannabis state, it is worth a try.  I don’t know if this will work for you.  It is medicine and needs to be treated as such in every way.  It won’t be for everyone.  My new medicine regimen is: Actemra 720mg (raised last June when I moved), 200mg tramadol ER daily, 50mg Coreg daily.  Yep I just ended that sentence!  I have replaced my opiates, chemo (will go back on during my bad season), nausea meds, nerve meds, and sleeping aids.  In addition, my BP has improved and I have started to lose weight now that the opiates aren’t causing me to retain water and gumming up the system.  My kids also report that I am perkier and more relaxed!  UM, FANTASTIC SIDE EFFECT OF CANNABIS! ***new update.  I am on less Actemra now because I am losing weight, and my BP stabilized.  As of August 2014, I am only on Actemra and an occasional tramadol er 100mg.***

I am really hoping that moving to something natural will help my body preserve some of this life.  I truly want to be there for my granddaughter (5 months old!) when she has kids.  I know eventually I will need these meds again, but that time is not now.  Let’s hope the future holds a cure.  Autoimmune arthritis may kill, but I am its worst nightmare!

 

Cherry Slider x Grape God Caviar – Caviar Review

This is "caviar", which is infused with hash oil and rolled in keef!
This is “caviar”, which is infused with hash oil and rolled in keef!

Type: Cherry Slider x Grape God, caviar

Uses: insomnia, severe pain, severe nausea, severe spasms

Medicine Replaced:  sleep aids, zofran, oxymorphone

Smell:  This has a strong smell of hash oil, but absolutely smelled like cherry!

Commentary:  Save this for your most severe symptoms.  You will be stoned after!  This is the next step when even the stronger strains aren’t working.  I did use this for some nights when I was seriously awake and needed to sleep.  I have not used this during the day because it is very strong!  Know that caviar vaporizes at a lower temperature, so adjust your temps if you are vaporizing!

 

Colorado Crippler – Strain Review

I don’t have a photo, which means I need to get more! 😉

Type:  Colorado Crippler

Uses:  Insomnia, muscle spasms, nerve issues, moderate pain

Medicine Replaced: zofran, gabapentin, prescription NSAIDS

Smell:  This has a very spicy smell to it, but has some pine undertones.  This one smells like Alien OG a little.

Commentary:  Colorado Crippler is a fantastic strain for any moderate to severe symptoms.  I would use this mostly for withdrawal symptoms when my arms would start burning.  It would relax the body and restore the nerve functioning rather quickly.  It didn’t work for my most severe symptoms, but this is great when you have something that needs more than a light strain!

Master Kush – Strain Review

 

Took this photo from Nuggetry since my camera is shot!
Took this photo from Nuggetry since my camera is shot!

Type:  Master Kush, indica

Uses:  severe pain, severe nausea, headaches, insomnia, muscle spasms, spasticity

Medicine Replaced:  zofran, sleep aids, hydrocodone, oxycodone

Smell:  Master Kush has an earthy smell with more wood like overtones.  Smells like a good Kush!

Commentary:  With Master Kush it took 2 times before I really could judge the usefulness of it.  I found it to be a stronger head buzz than some of the strains I use, so I reserve this for severe days.  That being said, it has helped curb the pain that WAS helped by opiates.  I highly recommend using this for anything severe or at night.  This is a strain that you won’t be as functional on, so be mindful.  It definitely relaxes the body and dulls any muscle pains.  So far ALL cannabis has been great for nausea, but this is especially good for the severe times!