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VACTERL syndrome and Cannabis

I know from a lot of people, cannabis is a scary and taboo topic. I grew up in Texas, and people from both sides of the family were drug addicts. From popping pills, to alcohol abuse, to heroin. My cousin died from an overdose. My cousin from my stepdad part of the family got shot from another dealer, and he died. In a lot of cases I was always against drugs including cannabis.

We had D.A.R.E. videos in health class that claimed that cannabis makes you hallucinate, that it fries your brain, that it kills brain cells. Those videos were very scary and convincing.

But I never questioned it. I mean, why would I? I’ve already seen what drugs could do to people, why would cannabis be any different? Especially since they are categorized as on the same level as heroin.

And I stayed in that mindset for many years. Nobody really told me any different. All the while, having VACTERL syndrome.

For me personally, after all the surgeries, I now deal with moderately severe scoliosis, having 2 uteruses, and 4 ovaries, and stomach problems such as severe cramping, constipation, and risk of deadly infections.

Ever since I was 7 or 8 years old I was dealing with scoliosis, but nobody knew at the time. Not only would I have back pain or walking lost distances even at that age was a little challenging, but from 7 to13 years old my spine would lock up usually if I was playing on the ground or in a certain position, and all of a sudden I would have immense pain throughout the back of my body, and I would be pretty much paralyzed by myself, I couldn’t move or get up. My brother would always try to help me up or pick me up so I could move again. Luckily I had a brother and who was almost always beside me.

When puberty hit is when we started noticing changes that weren’t supposed to be happening. I was getting pain inside “there” as well as extreme pain in the abdomen. Pelvic exams hurt a lot. And as I got older, I discovered so does certain types of sex. Periods were messy and very painful. In my first few years of puberty no matter how many times I would try to go to the bathroom, the blood would soak through my clothes.

I began showing a hump on the right side of my back that was progressing, and that was what caught the attention that I might have some kind of back problem.

Come to find out, I have moderately severe scoliosis, but I was only a couple inches short in order for them to do anything about it. You need to be really bad, and be at a certain age in order for surgery to be performed. So I’m stuck with it for the rest of my life.

I have fused vertebras, a 45 degree curve, arthritis, and everything else is hard to understand.

But even though the lock-ups are rare now, it still has been a staple of constant pain in my life. And it seems to progress as I get older. I have a hard time standing, sitting, walking, for long periods of time. When I used to work, they wouldn’t allow us to sit down. So I would go into the bathroom and cry because of how much pain I was in.

And recently, that scoliosis has progressed. My arthritis spread to my knees and ankles. My back pain was more severe and more frequent. I had limited movements where I couldn’t stretch my legs all the way, or couldn’t turn my body as well, and since I can’t turn my head all the way turning my body is crucial to look out for cars on the streets or anything else. Doing regular things like staying in a seat for 30 minutes or being able to go somewhere without that much pain, jumping out of the car, fuck, bending down to tie my shoes, or give my cat some food and water, had changed from irritable, to severe pain and in some cases, so stiff that movement was limited.

So I changed my diet to vegetarian. I exercised 2 miles every day. I was trying out yoga. I was taking aleeve or ibprofen. Anything that I could, and I knew that I didn’t want opiates. That was not an option for me. But even all these changes, they all helped a little bit, and only for that period of time. Like, while I was walking, or while I was stretching. The OTC medications didn’t do anything for me. I never felt a change. I was taking 4 pills at once, and tried to do it every 5 hours. But my stomach didn’t agree with that at all. I would get very constipated and cramping. And not all of it is practical. I try to stretch in a grocery store, and people get weirded out. And I could see if you do yoga or run around in the middle of your shift, you could be seen as unprofessional and fired.

Weirdly at the same time I was going through this, in my recommended sections of YouTube and some blog sites, were articles about medical cannabis. How it has helped with people who have chronic pain, or nausea, or seizers. Even anxiety and depression. And at first I was like “ehhh” These are fake doctors, these are people who are just saying it has medical properties as an excuse. But then I looked at the experiments, I watched from a video how drastic it has changed children with autism or epilepsy. Or from senior citizens who have used cannabis for 30 years or more, and not just teenagers or people in their 20’s. They used it for medical use.

At first I was researching to see what the heck medical cannabis was and if it was legit. And then I kept researching because I found it interesting, and I was passionate at the potentials of the plant before even trying it. Just the experiments and testimonies alone gave me interest and hope.

So first, I tried a CBD strain called “charlottes web”. CBD is cannabidoil, and it is a compound of cannabis that is non-psychoactive that reduces pain, inflammation, anxiety, and reduces seizers. It also helps with symptoms of PTSD and autism. I got it in an olive oil tincture, and I started the lowest dose you can go. But with my pain, I noticed I was getting a little more dose than recommended on the bottle, meaning I was using more in order to sufficiently manage the pain. But at my right dose, which was 21mg of CBD oil, I still had soreness, but I noticed I could walk, and stretch, and bend down. I didn’t have the urge to cry from pain anymore. Although I still had some pain, and it did nothing for my stomach.

Then, after I realized I just went through almost a whole bottle in a week due to me needing to up the dose, I realized I needed something more potent. So I tried vaping CBD which was one of the higher mg you can go it’s 400mg per bottle. But per ml it’s 20mg. And it’s still lasting so long I haven’t even refilled the chamber yet. But because it’s so high I don’t need near as much. I just puff a couple times and I am done. Still the same final result of the web, but that’s fine for me for most of the day.

For children you can get the charlottes web tincture in a higher dose, for me though the vape was cheaper, and it’s more immediate.

And then I moved onto flower. (Cannabis with THC in it) I vape it and I micro-dose it. Which means when the vape is done, I am done. Or when I can actively feel the effects alleviate before the session is fully over. The good thing about vapes is you can stop at any time, and go back to it in the same day if you need to. And with micro-dosing you do feel high, but it’s not substantial unless the strain is potent. So you can still fully function. I have discovered dosing is the most important aspect. And it can be a little bit difficult if you have to dose yourself instead of following guidelines on a sticker like we’re used to.

But the flower is what took away all of my pain. The flower is what gave me an appetite in the morning when usually I never eat breakfast because the thought of food in the morning makes my stomach turn. Flower is what alleviated my stomach pain. My STOMACH PAIN. Something that only morphine in the hospital has ever done, and morphine creates constipation ironically. Cannabis doesn’t cause constipation. That’s the thing with my VACTERL syndrome, a lot of these medications create constipation for me, which can be dangerous in my circumstance.

And I still do homework, I still clean, I still talk. In some strains, cannabis has helped me do those things. California orange creates motivation in me and makes me do things I had previously procrastinated on. Cherry AK-47 helps me focus on studies instead of reading and thinking and reading and thinking, which sober I have a real problem with. Some strains of cannabis help me get “locked in” and finish faster. CBD and sativas help me get over social anxiety and it makes it easier to talk to strangers. It helps me smile and say what’s on my mind.

Indicas make me quiet, reserved, forgetful and stare into space. Which is why I don’t prefer indicas unless it’s a severe body day. Indicas are GREAT for pain don’t get me wrong, but they have those side effects for me. Thankfully in the day that we live in there are TONS of hybrids where you can get the best of both worlds. Pain relief of an indica, but a clear head and energy of a sativa.

You do have that side to be wary of. But from my experience, would I say that THC has no medical benefit, that it only gets you high and that if you’re a medical patient to only seek CBD? No. But that’s the argument that a lot of people spew.

CBD helps some pain, anxiety, and can help seizers and people with autism.

THC helps a lot of the pain, melts away anxiety and replaces it with happiness, gives you appetite, and helps stomach pain. Which I have tried, and CBD does not help stomach pain at all in my case.

Would I say cannabis is a miracle drug, that it’s going to cure anything? No. Don’t be misconstrued cannabis is not a cure for anything. It only treats symptoms. How I look at it, is I see it as a healthier and working alternative to something like ibuprofen or Aleeve. I also see it as a healthier alternative to anti-depressants and anti-anxiety medication. And even though it helps with stomach pain, if you need treatments and laxatives, DO THEM. Cannabis helps aid digestion but it is not a substitute for treatments for those of us that our bodies have a hard time having bowel movements.

And again, dosage is very important. The negative side effects you see from cannabis is from excessive use in childhood through adulthood, and from cannabis abuse itself. Now it’s not physically addictive, you won’t get withdrawals from cannabis but just like food, television, porn, anything you do in excess you can develop mental addictions. And this is in direct link to your dosage. If you take more than necessary especially in youth, it could potentially change the brain function. If you take more than what is needed as an adult you may not get a lot done. You may be depressed or comatose. Which is why I micro-dose.

I am telling you guys this because I realized…that if I had this medicine as a child, everything would have been so much better. I would have been happier, more active, I wouldn’t be ashamed of my body or afraid of doctors and needles. I would be able to go through treatments without screaming, vomiting, or crying. I probably wouldn’t have “lock up” spine as a child, or at the least potentially I would have had them less often. Even just a couple years ago when I was in the hospital, I could have used cannabis as a pain reliever instead of morphine, and I would have been able to eat in the first day instead of getting held in the hospital for 3 extra days because I had a hard time eating.

And I don’t know if I would recommend THC for children, not the higher THC levels. But there are strains you can find that have a ratio of CBD and THC where THC is very low but it could still be helpful.

I know this all depends on the parent, and the availability of cannabis around you. I just wanted to get this out there to bring information out there and let people and parents know that this is an option. If we can relieve our suffering and our children’s suffering I think that we should. I think CBD for children is the way to go, for children with more severe symptoms I think CBD with just a little bit of THC like 0.3% is good for children. That amount shouldn’t leave any negative side effects. Also, CBD dampens THC, which means you won’t get as high. In my case, sometimes I over-estimate the dosage and get stoned or in one case paranoid. A couple puffs of CBD and I was sober in 5 minutes. So if you do take too much, you don’t have to wait it out you just take some CBD and it will reverse the high effects.

There are also edible companies called Terra and Kiva. These edible companies sell cannabis edibles in micro-dose as well. This way you don’t have to guess how much is in each bite or square. It tells you on the label exactly how much you are getting in each bite or square. And it’s usually between 3 to 5mg per piece of candy or mint.

This is also something I would advise adults and some children to try. Children I would stick to the 3mg THC mints, and adults I would say the 5mg candy.

But cannabis effects everyone differently, and it isn’t for everyone. Like with any medication sometimes you have to experiment what is right for you or your child.

But I think to let people know that this is an option to treat VACTERL syndrome symptoms is important if you or your child is suffering from pain, nausea, or lack of appetite.

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Thanks !

Thanks for sharing this, you are awesome !

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