Part 3 of 5 - my story

in #mystory7 years ago

Part 3 of 5 of my health history. I took a bit of a break, but decided to get back into posting. More to come next Friday

Part 1 - https://steemit.com/health/@swinterasu/the-beginning-the-first-of-5-posts-that-contain-one-long-story-of-my-health-school-work-and-a-bit-of-my-love-life-because-i

Part 2 - https://steemit.com/fibromyalgia/@swinterasu/post-2-of-5-the-ongoing-saga-of-my-health-school-and-work-history

I tried college right out of high school.

At 18, I was living in a dorm, making amazing friends and having a great time, except for the massive problems I was having with my health. The summer before college started I was in a car accident where I was rear ended a high speeds that was so bad it totaled several cars.

(not my actual car, but pretty much what my car looked like after it was hit, the trunk was decimated, its amazing that we made it out of there with as little injury as we did)
This caused my Fibromyalgia to flare up quite a bit. My depression deepened and my pain increased. My insomnia was worse than ever. I made it through one semester but after the beginning of the second, I began to fall apart. I remember calling my mom & having a meltdown saying that I needed to come home.
At 19, they finally moved me from the pediatric unit to the young adult unit. On my first appointment with my new doctor, he knew exactly what was wrong with me. Fibromyalgia. Finally, a name for something that had been plaguing me for so long. But as I mentioned earlier, not much was known about the disease. And at the time, they thought it did not affect kids, which is why it took me so long to get the diagnosis. I tried all the targeted meds, went to groups, researched online and bought books. I even went to the Fibromyalgia and Fatigue Center in Las Vegas. They took 32 vials of blood. Yes, I meant to write 32 in that last sentence. When I initially signed up, they didn’t tell me the bill was going to be over $10,000 in tests alone. I went out for a few rounds of treatment, but other than a massive energy boost for a bit from the B-12 shot, I didn’t see much different from the infusions. So if you are reading this & have Fibro and are thinking about the F&F center, just be aware of my experience (though maybe you aren’t reading this because of that, I tried to find their webpage for a picture and it is no longer and all i found was a bunch of reviews that mirror my experience). I did more pain management classes & even stayed in San Francisco with my boyfriend to do the level 3 classes out there.

Yet again, everyone was at least 10 years older. The biggest game changer at this point in my life was the discovery of medical marijuana.

I had known about it for a long time, but was afraid to try as my family was pretty straight laced and I was afraid of how it would interact with all the meds I was taking. But finally, a few of my best friends convinced me that it would be worth it to try it to see how it helped the pain & insomnia & depression. It was unlike anything I had ever tried before. The first time I tried it, the pain lightened up within 3 puffs. It was the first time in 7 years that I was almost pain free. That night was one of the best nights of sleep I had in years. I knew I could get my medical card, but was afraid to talk to my parents about it, so I just bought it like most of my friends did and was content with that. I got to the point where I was well enough to go back to school in Arizona for about a year, but could not keep it up. I finally moved back to California for good. I stayed with my parents for a while, but eventually was spending so much time with my boyfriend in Daly City that it made more sense for me to live with him.

I was lucky with friends and loved ones who would come hang out, but at this point my health was so bad that I stayed at home most of the time and was smoking so much that I was high almost all the time just to deal with the pain. Finally I broke down and knew I had to get my card and make everything legal, which meant talking to my parents. I was so afraid of the conversation my boyfriend actually offered to talk to them for me when I wasn’t there. They ended up just being happy that I found something that helped relieve my pain. Eventually we had a conversation about what would be the healthiest way for me to ingest what would help me. I told them that there was this device call the volcano.

I told them that I was pricey and they said that was ok, this was about health (It is much better for you because you are just vaporizing the THC crystals and not burning the plant, so you are not getting the tar and toxins from inhaling smoke). It turned out to be one of the best investments ever. I’ve had mine for 10 years this year and have only had to have it repaired twice (each for $45). Original price was about $600 with taxes, but it is the only piece that I have bought in 10 years, so think about how much glass you go through when it breaks easily (My long-term high school boyfriend and my now husband have both purchased pieces because they like glass better and I had pieces from before, they have slowly been breaking over the years. Don’t even get me started on how much money we have spent on dab rigs that have fallen over & shattered.) They believe there may be a hereditary component to Fibromyalgia, and my family is living proof. My dad had bad knees for years, but he eventually developed Fibromyalgia too. The pain was so bad and kept him up so much that he started using weed to help sleep and relieve pain. He most often uses edible, but they put him to sleep (more often than not an added bonus) so he was looking for something else.

He had been growing plants for me for a little while as I had my grow permit and he is a green thumb, so he had some on hand. Apparently my mom & he tried to roll a few joints before they gave up & asked me to help them buy a volcano because it was clean and had helped me so much. Talk about going from 0 to 60!

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Hey @swinterasu,
I feel for you, my wife and 3 of our 4 children have EDS, while I don't feel the physical pain myself I do know that it can be devastating for those that have it as I am with them in life.
Most people and several doctors and dentists have never heard of EDS so finding good care can be difficult. Baylor College of Medicine has a study going on that is tracing the genetics of the disease and hopefully they will help uncover some of the mystery of EDS.
Please continue your story, I will keep you in my prayers.
@sultnpapper

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