Righteo, let’s talk about marijuana, shall we! 🙃
Due to a recent compromise with my specialist, I’ve finally agreed to start taking pain medication, BUT only on the extreme pain days.
Admittedly, there are times when I have to wave the white flag and surrender to the pain, but getting defeated by that pain then sets off a ‘not-so-good’ chain reaction on my mental health 😐
Now, I can’t speak for all of the EDS zebras out there, but one of the most common things we get with Ehlers is severe stomach issues/GORD (Gastro-Oesophageal Reflux Disease) so our tolerance levels aren’t that flash when it comes to taking medications.
At the moment, my best friend is Endep (Amitriptyline) which was commonly used as an anti-depressant way, way back in the day, but it’s now being used in smaller doses for conditions such as chronic/nerve pain, bedwetting in children, MS patients, migraines, insomnia, etc.
Disclaimer: This is NOT a recommendation for Endep! It is NOT suitable for everyone! I take it for acute insomnia and wouldn’t get much sleep without it, but I cannot say for sure that it helps with pain [?] as it doesn’t seem to help mine.
So, with not being able to take most pain meds such as nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids/steroids, Lyrica, Tramadol, and now Gabapentin, which was the recent trial drug that made me really sick, I have no other options apart from Schedule 8 drugs.
I’ve recently tried Palexia (S8) which funnily enough didn’t make me too sick, but I got some really freaky hallucinations that scared the shit out of me and had to take a valium to calm my nerves until the bloody palexia wore off 😂
(for anybody who buys illegal drugs for the hallucinations – why?🤔 LOL)
Now, as most of us already know, S8 drugs are extremely addictive, and this is one of the main reasons why I don’t want to take them.
For me to jump on that pain-killer addiction merry-go-round is an absolute last resort – hence the medical cannabis.
Up until a week ago, I didn’t even know that I was eligible for medical cannabis 😲 and was still under the impression that it was only available for patients with epilepsy, cancer, and Multiple Sclerosis.
And no, I have no idea when the eligibility criteria changed [?] but I’m certainly not complaining!
Oh, and just in case you’re wondering? No, I don’t smoke/have any illegal marijuana, but in all honesty – if I’d been able to get my hands on it, I would have bought it a long time ago to help with the high pain days and stomach issues.
So, with being eligible, my GP filled out the referral paperwork and the process started – which was an initial 15-minute screening phone call done by a medical cannabis nurse.
After passing that, and apparently being the first EDS patient to apply (with this particular medical cannabis company) I then moved up to the next stage.
Next week I’m booked in to have my first proper consultation with the licensed medical cannabis doctor, and then from there, the paperwork gets submitted to the Therapeutic Goods Administration (TGA)/State Government for approval.
(I’ve been told that the TGA/State Government approval time is approx 24 hours > 3 days but I’m going to allow a few weeks – just in case)
Once it’s been approved, and the cannabis doctor has permission to write me a script, we then have another consultation to talk about the best strength/dosage, and I’m given a medical cannabis prescription.
Apart from what I’ve just said, I wouldn’t have a clue [?] and the only reason I was able to explain that much is because of how they’ve explained it to me.
I have no idea what form the medical cannabis comes in [?] but I’ve read that it is either oil or capsules??? *shrugs shoulders*
NB: For anyone in Australia who’s considering going down the medical cannabis road, be prepared because it’s unbelievably expensive! 😤
Not only was I in shock when I found out the costs involved – I was also angry, and somewhat disgusted, as there’d be a lot of people who wouldn’t be able to afford it, which is just so unfair.
I mean, seriously! What’s the effin point of making medical cannabis available if it’s charged at a price where the majority of people can’t even afford it – especially if they’re on a disability pension? FFS! 🤬
No wonder people take the risk and buy it illegally!
It really angers and saddens me that so many people will miss out because of the ridiculous/through the roof costs, but my fingers & toes are tightly crossed that in time – the sooner the better – the costs will come down to make it accessible to EVERYONE!
*staying calm* *woooooooosaaaaaaaaaaah*
(Update 23/10/19 – it’s not as expensive as I thought it was going to be as the ballpark figures they were giving me were wrong. The latest costs are in Medical Cannabis – Update #2 that was published today)
So, is medical cannabis even going to work for me? Who frign knows? But I’m definitely going to give it a go, regardless of what it costs if it’s going to help change my quality of life.
At this stage, I’m not going to share the details of the medical cannabis clinic I’m going through, but I’ll add some links at the end of this post for some general/across the board information.
Once I’m finished with the process and have tried the cannabis product, I’ll do a ‘Medical Cannabis’ update and let you’s know how it went and/or how it’s going?
Enjoy the rest of your weekend! 😊
Hugs / Peace Out! Essie ❣
- Australian Office of Drug Control – Patient Access
- Therapeutic Goods Administration (TGA)
- Medical Cannabis – Alcohol and Drug Foundation
Oh shit, nearly forgot!
Before I sign off, I just want to quickly clarify something as I’ve already received msgs from people asking me about it >
NO Ehlers-Danlos Syndrome is NOT a neurological disease as stated by Sia on Twitter. Yes, Ehlers can have neurological components to it, but it is NOT a neurological disease!
For further information please visit the Ehlers-Danlos Society website.