I Used to Be Ashamed to Use Medical Marijuana to Fight Myasthenia Gravis

I Used to Be Ashamed to Use Medical Marijuana to Fight Myasthenia Gravis

Cannabis is illegal where I live, meaning my first interaction with it was also illegal. I do not pride myself on that fact. Actually, it has been the root of a lot of shame in my past. Finding relief in something that many perceive as a “gateway drug” never quite made it into most of the conversations about my health. Until I started with cyclophosphamide infusions.

I have had 17 of these infusions in total. Cyclophosphamide is an immunosuppressive infusion used to treat refractory myasthenia gravis and some cancers. I received the infusion in the oncology ward. The oncology pharmacist had to mix my medicine cocktail, and the side effects were, among others, hair loss and a weekend of intense vomiting. That is why I just refer to it as “chemo” now. It helped people understand that this infusion was much different than the immunoglobulin infusions I had been receiving in the years prior to chemo. This infusion did not mean that I would be jumping for joy right after discharge from the hospital. On the contrary, I would lock myself in my house for three days until the side effects had subsided and I felt less like death.

Initially, I followed the doctor’s instructions to the core. I took the antiemetics (anti-vomiting medications) as they prescribed, I took the pain meds they suggested, and I did so without question. I wanted to survive this like I had survived my previous obstacles.

Their advice did work, but there were more side effects from these medications. The antiemetic and pain medications made me incredibly constipated. That resulted in a lot of extra pain in my lower back and stomach. After a while, those medications stopped working, too. I’m no pharmacist, but I do not think we were meant to use Zofran (ondansetron) that intensely for two years.

I needed something else. So, I decided to follow the medical cannabis route. I soon discovered an entire community of people who were willing to help make this horrible chemo-filled journey a little less overwhelming. And that is what they did. They provided me with cannabis medicine galore: There were alcohol tinctures, cannabis oil pills and suppositories, edibles infused with cannabis, and even just the usual buds to smoke. The best part about all of this? It worked.

I got rid of my prescribed pain medication and did not bother with Zofran anymore. I could go through the three days of recovery without vomiting or wallowing in pain. It worked. I was ecstatic.

Cannabis allowed me to endure all that is cyclophosphamide and its side effects without dropping out of university. I passed all my subjects despite needing these infusions every four weeks. I know I could not have done that without cannabis.

Now it is almost a year after my last cyclophosphamide infusion, and it seems that it worked, too. I am in better health and responding to cyclosporine. However, cyclosporine brings its own set of side effects. I am still using cannabis to ease the neuropathic pain and appetite loss that I have been experiencing.

There is no shame in going to extreme lengths to feel better, to cope, or just to ease the burdens associated with falling ill. The only person who can judge you is you, and you do not have to. I am doing everything in my power to be able to function like a healthy individual in a society oblivious to the trials faced by those with rare diseases. This “gateway drug” was my gateway to a better life. I will never stop fighting, in any way I can. Life is too beautiful.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

One comment

  1. Dear Retha, your June 29, 2018 article “I Used To Be Ashamed To Use Medical Marijuana To Fight Myasthenia Gravis” struck an accordant note with me. I have been using CBD hemp oil for about 3 months. On my last visit to my neurologist she said that my lab numbers were down from my previous visit. Wowzer! Additionally it has helped lower my blood sugar. As I am also a diabetic that gives me a double wow!! I am also 5 years post back surgery (fusion of L3-L5) ergo a gross amount of pain daily. The CBD pain cream gives me wonderful relief almost immediately. So I refer to it a my trifecta of benefits. :>)

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