Growing for chronic autoimmune disorders: balanced CBD/THC

[j.o.i.n.t]

On 18/03/2021 at 8:29 AM, MissusRhapsody said:

and when my brain was no longer clouded by agony, I could see just exactly how ravaged my body has been.

 

I've only quoted a bit, but this section of your writing really does speak to me. I had a similar experience when recovering from a collapsed disc. It was when, figuratively speaking, I'd 'battled through' it hit me just how fucking hard it had been.

 

I actually attributed that 'oh, I'm getting better - oh shit look at me' to coming off tramadol too quickly, but perhaps it's inherent in experiencing debilitating pain.

 

I must learn more about it. Thanks for sharing, I've wondered a few times if it was just me!

[MissusRhapsody]

I definitely don't think it's just you @j.o.i.n.t - I've definitely had similar conversations with friends who also have chronic illness. It's why I think a lot of my fellow spoonies overdo things; we feel better so we try to get all the stuff done we couldn't do while we were stuck in bed with pain. But then that just kind of creates a spiral of flare and flurry of activity. This time round, I'm trying to break the cycle by acknowledging my pain and not talking myself out of paying attention. It means medicating when it starts, and not when it's become so bad I can barely speak. 

 

And it also means acknowledging that it feels really weird to not be in pain anymore, and to associate the euphoria with just being high, or being addicted to pain medication (as so many health pros tend to think). This was a discussion had in my chronic illness community recently - that maybe we aren't just enjoying opiates, we're enjoying being without pain for the first time in what may have been years. To not be limited by pain in some way is so foreign to me, I struggled to get my head round it the first two weeks. Now I'm having to rewrite the rules of what I thought pain was about, and what level 'acceptable' pain truly is. 

 

This flare isn't mucking about and treating it is becoming a real struggle, but I am the less stressed out I've ever been in a flare. I can concentrate on dealing with my flare and literally nothing else right now, and that has helped while the steroids are still not prescribed. I'm finding new coping skills, not getting so anxious about all the things I can't do while flared, and can spend more time being delighted by little things most people don't even see. It all helps.

[MissusRhapsody]

It's too hilarious not to share: this middle-aged woman with zero clue about cannabis, trying and failing to operate a vape via a remote control....honestly, who the hell thinks giving someone high as hell this kind of power is sensible?!

 

But first, the grim shit: I am not well, gentlefolk. This is the reality of a steroid burst and taper. But I have been ill for a long time and I know that when this option is given, it's because they're trying to save your life. And I'm all for trying to get one last crack at that whenever possible. That doesn't make me inspiring - I'm just greedy. 

 

But it wasn't even a straight forward process. The pandemic is playing havoc with NHS communications. No one knows who still has patients, who is suffering from pandemic aftereffects, and who is even well enough to be seen. Who is vaccinated, who isn't, and then who will be off sick or not in order to catch up with a backlog of appointments. The long story short of it - I was sick enough to need emergency medical intervention a month. A month later, and my team only just realised over Easter holiday I still hadn't even begun my taper, and the alarm was so palpable in my GPs voice I felt almost apologetic. I've been hearing a lot of panicked team members - and so I've been trying to do what I can on my own for my own care, but there is only so much I can do.

 

The result was it was a month later before the steroids started. And I'm not even sure they've caught my illness in time now. But, here I am, still here, still sucking the marrowbone. I'll take what I can get. I am mid-burst and taper, in a gruelling month when even my current medication isn't quite doing the job. For all I want to be happy about having medical cannabis, the actual process is proving to be a nightmare of a business model. Try to order what you need? Be prepared to wait weeks before anyone even gets back to you about the order you've placed.

 

While I sat in the worst of a steroid adrenal rush on a Friday hoping against hope my meds would arrive, I instead ended up staring in disbelief as my order stopped somewhere in a delivery trunk and stayed there the entire weekend. This isn't Ikea furniture; it's medication. Therefore, after a discussion with the husband, it looks as if I'm going to have to grow for myself again. I really hadn't wanted to, so be it. I can't have that happen again when we are still trying to figure out what is actually going on with my immune system.

 

Eentually, the cannabis medication did arrive after I was three days in max steroids. As I fight through wave after wave of what generally amounts to putting a body through a server stress test to see what comes loose - moonface, edema, chills, mood swings, eye swelling, fatigue followed by a burst of energy like 3 Red Bulls and no downtime EVER - I can put the cannabis into the vape, and at least tamp it all down just a little. I'm not sure how it works, and maybe it just makes it all the more bearable. But I can walk a little further, and smile a little better even while I'm having to do one of many dozens of things I do in a day to control the symptoms while the steroids do their work.

 

But there's no way I'm any good at any of this! Here I am, with this posh desktop thing, inflates a bag for vaping, and I've become meticulous amount measuring, pouring, heating, finding the right temperature. It's all very clever and very nerdy and I'm sure there are menfolk who talk lovingly to these kinds of devices when they don't think anyone is looking (it's ok to admit it, gentlemen, I won't judge). 

 

But I am a middle aged woman in a perimenopausal/adrenal steroid storm of inflammation. I cry if I hear a bird singing right now. You don't give this person a remote and expect them to be able to deal with it. 

 

So I have loaded the vape, and I have the remote - due to the sheer magnitude of symptoms after days of no medication, I used the vape a lot and the battery was running low. As I take the bag off the top of the vape elbow, I try to turn off the vape fan...but it isn't shutting off. And the clouds of cannabis are now filling up my room. 

 

Like I suppose any good stoner, the first thing I do is panic in a tight circle, which accomplished exactly what you'd expect - because I haven't figured out that I either need to put the bag down (SACRED MEDICINE) or the remote. Eventually, I get my shit together, and then try to squint down beneath the growing cloud overhead at the controls. And then I realise I have no idea what any of the buttons do, as I always used the remote.

 

I'm old enough to remember Cheech and Chong, so by now I'm laughing helplessly, as the sheer absurdity of what's happening dawns on me. It's also the laughter I needed. Illness sucks, yes. This is the worst year I've ever had health wise and I have confronted some very uncomfortable truths. But it isn't all terrible, and it isn't all grim. And if anything I've learned how to cultivate and enjoy just a few more moments of absurdity now than I used to. And so I was able to go to my husband, nearly unable to walk with laughter, and get him to bail me out - which was the laugh he's needed to. I can't imagine what it looks like to watch what I'm enduring and know there's nothing at all you can do about it...but he's doing exactly that. And I think he appreciated just standing in the room and inhaling dramatically.

 

In any event...still here, still fighting, still hoping. I wish you all all strength and good health.

[j.o.i.n.t]

How's things, @MissusRhapsody? ... I enjoy your writing, I think I'm just fishing for more!

 

On 15/04/2021 at 6:39 PM, MissusRhapsody said:

So I have loaded the vape, and I have the remote - due to the sheer magnitude of symptoms after days of no medication, I used the vape a lot and the battery was running low. As I take the bag off the top of the vape elbow, I try to turn off the vape fan...but it isn't shutting off. And the clouds of cannabis are now filling up my room. 

 

Like I suppose any good stoner, the first thing I do is panic in a tight circle, which accomplished exactly what you'd expect - because I haven't figured out that I either need to put the bag down (SACRED MEDICINE) or the remote. Eventually, I get my shit together, and then try to squint down beneath the growing cloud overhead at the controls. And then I realise I have no idea what any of the buttons do, as I always used the remote.

 

 

This is why I just sprinkle it in my rollies (ignoring a little dalliance with edibles/oil recently). I could see myself doing the same.

Edited April 24, 2021 by j.o.i.n.t

[MissusRhapsody]

Welp, I'm bruised, battered, and bleeding (a lot, actually - sorry menfolk, grim womb-business ahead). But I'm still here.

 

So, I've had all kinds of issues with my womb - not uncommon, because while my dx is officially rheumatoid arthritis, I have been trying to get myself diagnosed with lupus. If you've seen one of my posts of how my grow light literally burned my skin - welp, there you go. I'll leave you to go google that condition, and when you do, flip the image of Dr House the bird as you go by. Sometimes, it IS lupus.

 

I've had miscarriages and bleed outs regularly - enough so, I tend to need infusions to replace the iron I lose. This time, thanks to the pandemic, I wasn't able to safely have my infusions - I am too immunocompromised to risk being in an enclosed space, and the last one I had created a reaction I had to nurse myself through at home. 

 

Two weeks ago, I went into the GP as I was showing all the signs of severe anemia - I was fading in and out of consciousness, severe edema in face, hands, and feet, my skin was yellowing and my gums were nearly white. But I only moved to this community six months ago, and we've been shielding since.

 

So what happened when I presented, lolling, and struggling to communicate how much trouble I'm in, to my GP with my husband, the (male) GP profiled me instead of doing anything because he saw the cannabis scrip in my notes.

 

*inhale. exhale* 

 

Anyway. I could say a lot about this right now, but I won't. What I will say is, you can be trained in women's health but if you don't have a womb, you have ZERO ideas what is normal and what isn't. I've had this problem before with men doctors patting me and telling me not to worry when the women consultant comes up behind, looks at my notes and goes pale as she tries to efficiently save my life. Three times lucky, now. I don't think I'll get a fourth due to the law of averages, so...that's us.

 

In any event, I was able blearily to figure out what had happened in the car. My husband has only been my beloved for six years - he's still new to this, and he wasn't there the last time I got profiled when I was in anaemic hypoxia. Once I got home after I didn't get an examination, I zombied over to my iron supplements and managed to take one - which immediately made me more coherent, but also made me bleed a lot more.

 

A lot.

 

Emergency a lot.

 

I held it together for a few days - because as horrifying as this may all sound, it's not my first rodeo and I actually know kind of how to manage this, but at this point I could tell I was too far gone and it was time for emergency services.

 

Thankfully, this rural area was fully staffed by women who were well aware what they were seeing was anything but normal. I went into hospital for observation, tablets were given, and I even got to take my cannabis oil for pain relief because literally nothing else was working at this point.

 

While all this was occurring, one of the consultants let drop that my team finally believe that I have SLE - and she said this because she thought I knew. It caught me by surprise...but only in a "Well FINALLY". Seriously, I knew that already - I'm the one who has to put sunblock on in January if I don't want an itchy rash on my face. But it also means we are learning there are big gaps in my care that would explain why my medication isn't working, and never has worked that well. It means we can look at options and adapt my care, and it means I now have a normal that can be challenged - because now I have a team that isn't going to let me just sit and suffer.

 

I have always been aware my stoicism can border on dangerous - but medical trauma is medical trauma. And if I have it, it's because modern medicinal practice gave it to me. Every time I had a symptom that no one took seriously, every time my pain was ignored or I was told to stop being so dramatic. Every time I was told my real problem was I was a drug addict, even when the opiates sat untouched in my medicine cabinet because I kept telling myself to only take it if I really REALLY had to. It's why I've avoided cannabis for so long. It's why I even have to tell myself it's ok to take it now. And why it was so wrenching to see all my fears realised and it nearly killed me.  Again.

 

It's a lot to unpack, but I'm doing it. And weirdly, the cannabis is helping with that on many levels, and not just pain. When the nurses themselves sounded leery at first, until they could see how much pain I must be in, and then they were happy to let me use the oil, discreetly taking care of it for me, and even joking about not dropping my weed in front of the hospital (which I did, I'm still tired, and the nurse carefully picked it up for me).

 

It sucks I had a bad intro to this care team, but I'm glad we are getting there. And now they are going to sync with my rheumy team, with cannabis as part of my care as opposed to an embarrassing secret I need to keep.

 

And so, onward...still a long slog, and I am still on the border of 'critically ill'. But I'm also seeing how things can get a lot better, if I can just hang in there.

Edited April 27, 2021 by MissusRhapsody

[MissusRhapsody]

When I first started on the path, I did so because I found a person with Rheumatoid Arthritis who swore she had gone into remission due to cannabis. I've seen that kind of claim before - chronically ill people are desperate, and when you're drowning, you don't look at the price of a lifejacket. I've seen people get scammed out of a fortune for what generally amounted to vitamins and a diet regimen, thinking it would cure their ailment. I didn't want to be a sucker. 

 

But I still kind of hoped, secretly, I might be on the lucky ones.

 

That might have worked if my dx was just RA, but it's increasingly clear I always had SLE Lupus, and the RA is a co-morbid issue. It might have worked if we weren't in a pandemic where the healthcare system is already so backlogged, my care team should have been putting me through testing to see which organs were damaged over a year ago, and I'm only now coming up to having it done. I'm trying to stay hopeful, but after a lot of medical intervention over the past month, I've been sick a while and I can tell that something, somewhere, isn't functioning how it should. The steroid taper only took the edge off, and even though the health services where I live are running on a skeleton crew, they can only do so much for me. They're just trying to keep me going now until I can get into the specialist team, ill enough to need to do it by patient transport.

 

So for now, I'm just taking it one day at a time. It means living pretty intensely, in the moment. It's weird, as I'm not used to this kind of thing. To only think as far as today is a challenge, but I'm rising to it best I can, and even in between the rather grim bits, I have some delightful moments.

 

Maybe it is reaching a Certain Age, or just being stoned more often, but I find the Field in Which I Once Grew My Fux is Now Barren. I advocate more and apologise less for what I need and when I need it. This means I've become more direct with my team. If I can't travel or I am not mentally/physically capable to do a task or attend an appointment, I don't force it. I cancel. I used to default to apologising for taking up space or being visible. I no longer care. I'm well aware medical confidentiality should in theory mean no one knows I'm on a cannabis scrib but my care team. But I'm rural enough to know the whole town knows I'm using the stuff. Meh. Not bothered. I walk out at 6am with my camera lens and my fluffy slippers to take photos of the sunrise, and I'm sure I make quite a scene. Nope, don't care.

 

I'm just out here trying to do the living in the slices when I'm not doubled over in pain. So far, so good, one staggered step at a time. I sleep as often as a cat, but I no longer make excuses. I now schedule my appointments around it and if I'm up at 2am, I make a sarnie and watch a video, or open the blinds and watch the moon on the water for a little while. 

 

It hasn't been all brilliant though; the scrip is turning into a facepalm of frustration. One prescriptions flower was mouldy and it took over a week to sort it out (in the meantime I had no pain medication after leaving hospital). Now, my oil scrip is equally botched because someone on their team can't label years properly (the second time this has happened). I'm frustrated, and realising I'm going to need to have alternatives to the 'official' avenue. I now has good sunblock (thanks to everyone that gave advice, the P20 is fab), an extra switch to turn the light off when I need to do some tending, and I will have to supplement so at least my supply is reliable. 

 

There's no guarantee I'll get new treatment with my new diagnosis. Hospitals are so far behind, the fact I'm this urgently pushed forward means my team has been worried for a while now (they've been trying to get me in for appointments since December, tbf). In between all this love and light stoner stuff, I'm getting final affairs in order as I've learned even I have a limit of what I'm willing to endure.

 

But I'm willing to endure a lot more than I thought, so there's no reason to give up just yet.

 

This took me most of the day to write - kept pausing, resting, and getting back to it. It took a while, but humanity has a history of laboriously chiselling words into stone one letter at a time - if only to say 'I was here'. This is my chisel, and my stone. Leaving words on the internet, and maybe someone will read them

 

[Degsy]

Thanks for sharing @MissusRhapsody , sending good vibes your way , anything I could say seems a bit inadequate somehow

but I just wanted to say I read all your posts and they are really well written , funny (in a good way) and humbling

[j.o.i.n.t]

9 hours ago, MissusRhapsody said:

This is my chisel, and my stone. Leaving words on the internet, and maybe someone will read them

 

Every word. x

 

 

 

[Guest]

15 hours ago, MissusRhapsody said:

  This took me most of the day to write

Thank you for the time and effort.  I've got a little something from this and I'm sure others will too. I admire your spirit and applaud your attitude. 

[Personunknown]

@MissusRhapsody I can't put it any better than the above , Stay strong.

[purepotstill]

On 20/05/2021 at 5:49 AM, j.o.i.n.t said:

 

Every word. x

 

 

 

Nothing to add... Keep writing and giving us some news.

[Flamedodger]

@MissusRhapsodythats a heart breaking read and very similar to my Mum’s battles. She was diagnosed with Lupus in her mid thirties and she had osteo arthritis as a co-morbidity. She was ‘cured’ of the OA after being referred to a dietitian and she had to follow the most awful diet for years, but it worked.

Its ruined her thyroid and she now has sjrogens disease. At 78, she’s doing yoga, Pilates and Zumba every week, makes me feel tired when she tells me about it, but it’s the only thing you can do for sjrogens.

She has a really good consultant for her lupus, who has her on hydroxychloroquine, you know the stuff Trump reckoned cured covid  and it seems to be working.

I wasn’t sure whether to post on such a post as this I’m a bit tactless, but if my Ma can get to the ripe old age of 78, I thought maybe it might give you some hope. If there’s anything you want me to ask her with regards to her lupus, tag me and I’ll see what she says. All the best..x

 

[MissusRhapsody]

On 25/05/2021 at 9:16 PM, Flamedodger said:

@MissusRhapsody

She has a really good consultant for her lupus, who has her on hydroxychloroquine, you know the stuff Trump reckoned cured covid  and it seems to be working.

I wasn’t sure whether to post on such a post as this I’m a bit tactless, but if my Ma can get to the ripe old age of 78, I thought maybe it might give you some hope. If there’s anything you want me to ask her with regards to her lupus, tag me and I’ll see what she says. All the best..x

 

Thank you, sorry it took this long to respond. I am very tired and have declared this month the month of Nope. I am just doing...not much...after a rough year and a half. BUT I've seen some very good information about a study mixing two biologics together which was done here in the UK, and results look good. I will be asking my specialist about it.

[j.o.i.n.t]

How's that Nope going, @MissusRhapsody?

 

 

[Whatwentwrong]

Do any of you have a cancard. 

 

I was looking around paradise seeds' website at their strains and they had a "medical cannabis programme" where you get a permanent 50% off their seeds.

 

I know it's only seeds like and not prescription weed but still. If you click their banner and go to the bottom of the page there's a link to email and send proof of being a cannabis patient which the cancard does.

 

I've messaged them to check they take it.

Edited June 27, 2021 by Whatwentwrong