Medical Marijuana Discussions

I live in California, where marijuana is now recreationally legal. Anyone over 21, can go to a dispensary, and buy marijuana. There are regulations on where you can use it if you’re smoking or vaping, but other than that, it’s all fair game. As a teenager and adult, I never had the urge to try marijuana. Yes, I’d heard about it, but with all the medication I was already being put on and taken off of, it just seemed like a risk. Not to mention all the drug testing for school, work, and medical tests. Then the gastroparesis situation got dangerously bad, along with the Behcet’s, and you all know that story.

With the legalization of marijuana I don’t need to renew my medical card at the end of the month, but I likely will if I can find the funds, because it’ll entitle me to certain discounts, and provisions for having more in my possession than a recreational user. Not that I’ll ever have that much in my possession, I’m way too broke to store that much weed, but it’s nice to know that, were I to move somewhere that allowed me to grow some, I could.

Recently I’ve graduated to vaping a few times a day. It isn’t something I particularly enjoy, because for me I’d rather take less medication, including marijuana. I view it as both a recreational option, as well as something that has medicinal benefits. It’s all about how you use it. I would thoroughly enjoy the opportunity to join the recreational trend, and just use it periodically to relax, alone or with friends. Right now, I could theoretically smoke more with friends, or different strains with friends, and feel different than I do when I use it medicinally…but it sort of throws me off mentally.

How can something I rely on to avoid hospitalizations and severe dehydration, also be something I use for fun

My brain keeps comparing it to opioids because of what a professor said about the legalization of marijuana being a gateway to the legalization of heroin. Obviously he was off base, just based on the reality that heroin doesn’t have a direct medicinal use in it’s abused form…but it is an opiate. Opiates can be prescribed to treat pain. In fact, a lot of heroin users started by abusing pain killers. They switched to heroin because it’s cheaper. So what is it? What defines something as a recreational drug, versus something that is used medicinally?

In the end I think it comes down to how it’s used, and how it’s acquired. Yes, marijuana is legal in my state. If you smoke it until you can’t function, pay your bills, or exist, then you’re an addict akin to an alcoholic. If you use it periodically in a responsible manner, then you’re a recreational user. If you use it as recommended by a physician, then you’re a medicinal user. It seems simple, but people judge you anyhow.

Now that it is legal in California, people view my regular use of Marijuana, as though I’m some stoner who can’t get by without being high. Truth is that I’m rarely high unless I overshoot my intake, or change to a new strain that impacts me in an unexpected manner. 

I need marijuana, but only because Zofran can only do so much. (Not to mention waiting for it to kick in when you have gastroparesis can be excruciating. There’s nothing like taking an antiemetic and knowing you’ll probably throw it up…) If I can get a port, and start getting more IV fluids, then perhaps the nausea will be more manageable. As it is, I’m sort of low on options for treating the nausea. I can’t take any more Zofran than I am, and they would prefer I take less, because apparently there is a link between Zofran and an increased seizure risk. Phenergan increases your risk of developing a movement disorder, which is a problem since I’ve been on it so long. That caused a decrease in my dose, and I’m only supposed to use that as absolutely necessary. I’m allergic to Compazine. I thought I wasn’t because I didn’t have flat out dystonia like I did years ago, but after a few doses it felt like my muscles were on fire, and I was super twitchy.

Today I’ve had a bowl of gluten free macaroni and cheese, and two small rice crispy treats. I feel like I’ve eaten an entire family’s Thanksgiving meal.

This is life with gastroparesis. What I did eat, was courtesy of weed. I’m beyond grateful that I was able to even get that down. I haven’t had water today, just a little gatorade, and yes, I’m bad, I had soda. I’m working on giving it up, but I am addicted to caffeine. I’m also a graduate student with 2 weeks left of class before she starts her thesis, so I mean, it is what it is at this point. (Let’s toss in a personal life in turmoil, and finances in ruins, and I think we can excuse the fact that I consume 1-2 cans of cola a day.) Thankfully, for whatever reason, fizzy beverages are easier on my system than flat ones.

So yes, friends, family, and potential future people that I meet…I use marijuana and it has undoubtedly saved me from hospitalizations, passing out, and at one point, a feeding tube. 

On one side of the page is the list of symptoms relating to chronic illnesses you have, on the other side are the tools you have to deal with those symptoms. Ginger helps with nausea, it’s also totally legal for anyone to buy and consume because they just like ginger. It is possible for something to be enjoyable and fun for one person, while another person uses it for help in dealing with their health.

Advertisements
Medical Marijuana Discussions

Self Advocacy and Alternative Treatments

I am not a Google doctor…but I do have to do some research on my own behalf. With a rare illness, and even rarer manifestations of that illness, my own doctors often take to the internet in search of treatment options. Having failed literally all the conventional treatment options for Behcet’s, I’ve entered the realm of last ditch efforts, and when it comes to trying random things, Google isn’t really the worst thing.

The other idea is searching treatments for more common ailments, like Lupus and MS. Everything is theoretical, which would be fun on paper, but is much less fun in real life. The current idea I have, is plasmapheresis. Behcet’s is actually listed as one of the disorders plasmapheresis treats, but it’s not something commonly done. Whether or not my rheumatologist will be willing to try it, I don’t know, but I’d prefer to try something new, instead of committing to another round of chemotherapy.

How desperate do you have to be to ask doctors to literally filter all of your blood? I don’t know. I’m having constant tremors and muscle spasms, and neurology knows that this is the beginning of a serious neurological flare. Since we don’t know exactly how the Behcet’s is attacking my nervous system, it’s not possible to concentrate on the specific mechanism of attack. I compare it to a nuclear bomb. I know that we will be basically attacking everything, including the innocent parts of my body, but that’s what we did with chemotherapy, too. I’m embroiled in civil war right now. My body is attacking itself because it genuinely doesn’t know how to target the true hostile entities.

Another alternative treatment I’m already utilizing is medical marijuana. It’s something I never really thought I’d be a proponent of. As a teenager and young adult, I never even tried marijuana. It wasn’t something I was interested in. Then the nausea became unbearable, and I was going days without eating. Marijuana became the only option  I really had left. The effects of the right strain, are beyond description. IV Zofran is amazing, but not something I can do at home, and the oral options have to be processed before relief is delivered. I don’t always have 30-60 minutes worth of vomit avoidance in me. Marijuana relief is 5 minutes or less with vaping. The right strain (for me the best is Blue Dream) provides more relief than anything else I’ve tried. It also provides benefits beyond nausea relief, that would usually require additional medications.

There are those who judge me, and it frustrates me. I’m not vaping to get high, I just want to be able to eat some toast. I want a moment where I’m not consumed by nausea. Yes, there are strains I use that do cause a high, but I generally only opt for those strains if I can’t afford Blue Dream. The cost is, unfortunately, becoming something prohibitive. I’ve contemplated asking for Marinol, but because it’s a capsule, it still takes time to process. This is an issue because I have gastroparesis. You want fun? Struggle with nausea, but have a GI system that doesn’t process food, drink, and medication, correctly.

I don’t have a port. All of my chemo nurses, and phlebotomists, wish I had a port. If I had a port, we could get me IV medications, like Zofran, but my neurology team has begun to worry about Zofran anyhow. (Supposedly it has an increased risk of seizures, but so does severe dehydration.) I would love to do IV fluids. I would love to push most of my oral medications IV. All of this, but I would still utilize medical marijuana however possible, because it really does hit most of my symptoms effectively, and bypasses my horrid GI system.

Honestly, being chronically ill is all about finding what works for you. It starts with a wonderful medical team, extends to developing a support network, and ends with self advocacy. Some of my doctors aren’t big on medical marijuana, but after seeing me shrink to 120 pounds (I’m 5’10”) they mostly gave up telling me what I should and shouldn’t do in the marijuana situation. Vaping some weed was preferable to placing a tube for feeding me.

You are your best chance at receiving the care you deserve. It took me a long time to feel comfortable standing up to physicians, and asking for second or third opinions. I’m still not fully comfortable, but I know that I need to in order to get the weird care that I need. Having a rare illness can be extra challenging. There will be plenty of doctors who tell you that it’s all in your head, but if you know the difference between mental symptoms and symptoms of an outside condition, you need to push. I was told for years I was crazy…then they found out it was Behcet’s. Everyone who had told me I was nuts, felt bad, but I didn’t scream and shout, “I told you so!” I knew then, what I still know…I’m a weird rare situation, and it makes sense why nobody could figure it out for so long.

Be your own advocate, and seek advocacy if necessary.

Today I emailed a social worker to see if she could help me navigate the system I’m stuck in. If she can’t, then I’ll seek help during my next hospital stay. I’m not naive. I know there will be another stay, and it’ll likely happen sooner rather than later. As my symptoms increase, and my ability to care for myself decreases, the likelihood of going inpatient increases. Next hospital stay, I’ll be talking to a social worker affiliated with the facility. I want to navigate a difficult system, and I want to come out with whatever is best for me.

Self Advocacy and Alternative Treatments