本帖最後由 dkcapital 於 2016-7-23 16:06 編輯
應同學要求，尋找僵直性脊椎炎與大麻的案例
應允多日，未能着手，因爲工程浩大，但也得盡力爲之。
什麽是僵直性脊椎炎Ankylosing Spondylitis？？
Spondylitis Association of America 美國脊椎炎協會
我的故事:僵直性脊椎炎與大麻 08/22/14
My Story with Ankylosing Spondylitis and Marijuana
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=268116
這麼多，無法一氣呵成，將陸續逐段翻譯。因爲細節對當事同學很重要，所以我不省略。
我很不情願的寫這文。僅法律問題就能讓人止步，同時要分享個人極度身體疼痛的隱私，但是會把它寫出來，是認爲對他人有益。
I make this post rather reluctantly. The stigma and the legal issues alone are enough to hold someone back, but so too the intimacy of sharing one’s story of great physical pain. But I will make this post as I think it could benefit others.
簡單直白，大麻的藥效極度的改善了我的生活，自從18個月前發現使用後。因爲它，我不再覺得我在輸掉這場戰爭，十年來第一次生命品質的改善，大麻給了我樂觀。我的行動能力及精神狀態，大幅度的改善，驚喜的是，身體改善還在持續中。
Plain and simple, the medicinal properties of cannabis have radically improved my life since I discovered them for myself, about 18 months ago. Because of it, I no longer feel that I’m “losing” the war with my AS. Amazingly, it’s given me optimism about the quality of life for the first time in almost a decade. I have seen significant recovery in my mobility and mental state, and excitingly, the physical improvements keep on coming.
在談及大麻前，我需要給你們我的完整的背景訊息。終究，總是有可能是我錯失了什麽，以致身體失調，或有可能我的疾病體驗是獨特的，讓我們立即跳進主題吧 ....
So before I get to the cannabis, I think I’ll need to give the full background. After all, there’s always the chance that I’m missing something in my disorder, or maybe even that my experience of the illness is somehow unique. So let’s dive right in…
我在2008年4月時，被一個冷酷且不感興趣的老醫生，診斷出有僵直性脊椎炎(AS)。 在被告知診斷結果後，我非常震驚，像是號角齊鳴的遊行隊伍將經過房間。終于在過去兩年的身體及精神不適後，得到了一個合理的答案。
I was diagnosed with Ankylosing Spondylitis sometime in April 2008. It was done by a rather cold and disinterested older doctor, and yet the fanfare upon receiving that diagnosis could not have been greater for me. I felt like a parade were about march through the room. Finally I had an answer that made sense for all the physical and mental discomfort I had felt for the prior two years.
在2006年8月，失調第一次出現，帶給我消化系統問題及很大的胸痛。我被以可能的寄生蟲感染來醫治，因爲我才去過熱帶，在骨科醫師找不出我背有任何毛病後，指示我去物理治療。我繼續感到漸增的身體疼痛，同時也處在很大的壓力下，因爲我在惡補想提高我的學測分數，以便申請研究所，我的目標是進入一流的學院。突然間，我因爲疼痛而無法休閑，沒有能量做太多的事，在掙扎前行，我變得沮喪，成了沮喪與失調的惡性循環。
When the disorder first presented itself in August 2006, it hit me with digestive problems and a great pain in my thoracic. I was treated for possible parasites, as I had just been in the tropics, and sent to physical therapy when the orthopedic couldn’t find anything wrong with my back. I continued to feel greater and greater physical pain. I was also under great stress at the time because I wanted to cram for the GREs to apply to grad school, and my goals were set upon attending the top schools. Suddenly I struggled to run due to pain, my usual relaxation activity, and I could not marshal the energy to do very much work. I became depressed, and the depression fed into the disorder, creating a very bad negative spiral.
我的失調在2006年12月達到高峰。身體痛的讓我以爲我要死了，遍佈脊椎，肩膀，屁股，膝蓋，脚踝。那是如此的疼痛，讓我幾乎起不了床。但醫生仍然找不到解釋。沮喪加深，發展出恐慌症，我覺得肯定身體有什麽不對勁，在2006新年時沮喪至極(這時間有問題，該是2007？)，我決定下主意了。 我決定完全不爲所動，像是要讓我自己死掉。
My disorder peaked with its worst flare in December 2006. I thought I was dying from the physical pain, now throughout my spine, in my shoulders, in my hips, in my knees, in my ankles. It was so severe that I developed a significant limp and could barely get myself out of bed. Yet still the doctors could not find an explanation. My depression spun out further, and I developed panic attacks. I was convinced that there was something truly wrong with me, and upon a very depressing reflection on New Year’s 2006, I decided to do something about it. I decided that to not act, to not push forward, to not try to get better, would be a lot like letting myself die.
在2007年1月，我經歷了另一輪的檢測，X光片顯示背部仍然無異常，血液檢查爲陰性反應。我的家庭醫生認爲是憂鬱症，導致所有的疼痛，我從不認爲有此可能，但我希望那是真的，這樣我就可以吃顆藥就萬事OK了。我吃了百憂解(Prozac)， 我的情緒真的有改善，火燒的疼痛停止了。我仍覺得虛弱並有少許疼痛，但遠比過去好多了。最終，治療症狀(憂鬱症)，而不治療問題(僵直性脊椎炎AS)，是不夠的。另一個火燒的痛苦來了，當然又讓人沮喪 ... 導致了使用高劑量的百憂解。
In January 2007, I ran through another round of tests. X-rays of my back still showed nothing out of the order. Blood tests came up negative. My family doctor suggested that it was depression, and that it was all referred pain. I had never thought this could be possible, but I really wanted it to be true, that I could simply take a pill and everything would be ok. I went on Prozac, and my mood really did improve. And with the improved mood, the flare ended. I felt still weak and some pain, but it was far better. Eventually, though, treating the symptom (depression), rather than the problem (the AS) was not enough. Eventually another flare came, which of course is depressing, and well…the result was an even higher dose of Prozac.
問題是，如果你真的不需要百憂解，那用它很有可能會反應不佳，我開始瞭解。高劑量的抗憂鬱藥物，會導致顫慄及緊張，恐怖的是，我的醫生告訴我，我的症狀有第二型雙極性疾患(bipolar II disorder)的跡象。
The trouble is, if you really don’t need the Prozac, there is a very good chance of you responding badly to it, or so I’ve come to understand it. The higher dose of the antidepressant led to tremors and nervousness, and to my horror, my doctor told me that the new symptoms were a sign that I had “bipolar 2”. Lovely stuff. So then it was on to Prozac combined with a mood stabilizer. Symbolic of my subsequent experience, I really cannot tell you the name of this mood stabilizer. I just don’t remember it…nor do I really remember much of anything from 2007. In supreme irony, it was the AS that really saved me. Eventually another flare came, and in a rather dream-like state, I decided that there really must be something else wrong with me.
In January 2008, I quit taking the mood stabilizer and the Prozac, and I set off to again look for answers. Amazingly, I had almost no withdrawal symptoms from the drugs. Of course, my doctor did flip-out. Sure, I’d love to say I did the responsible thing, but I really wasn’t in a place to make a responsible decision. I stopped cold turkey because I was, well, drugged out, in great pain, and - most of all - desperate. Still nothing was found in tests, but an eventual new GP did refer me to a rheumatologist. And there goes my diagnosis…I tested positive for HLA-B27, and I was told the pain I described was quite different from the sort felt with referred pain/depression.
It may be dramatic, but I like to think of my experience with AS as somewhat “Homeric”. The disorder’s manifestation and eventual diagnosis were my “Trojan War” of sorts. The experience was - metaphorically speaking - every bit as epic, bloody, and tragic. Meanwhile, the experience since, my experience of trying to “hack” the disorder, has been my “Odyssey”. Again, metaphorically speaking, since my diagnosis my experience has been every bit wandering and crafty…though this story is not yet done.
After the diagnosis, I was prescribed Celebrex, I felt a marked improvement in my physical symptoms, and so I accepted a position with a graduate school and began in the fall of 2008. I had deferred from the previous year due to my apparent “bipolar 2” disorder. Even though I was not feeling as good as I wanted, I now believed that I could improve my condition through proper treatment. Of course, what is “proper” treatment for AS has, in my mind, become slightly confusing.
So the first of many life turns took me the holistic route in treating my AS. Trying out holistic medicine might never have happened without a random two-week vacation before I started my masters program. I had worked previously in Honduras as a divemaster (just after college), and I had remembered being told about this fantastic Nicaragua island that offered a serene, quiet and very inexpensive place for retreat. The roller coaster, madness even, of my life the prior two years was about all I could think of. I reasoned I needed some time to process the experience, and consider my “hopefully hopeful” future.
The funny thing is, while I was on vacation, thinking about what medication I would take upon my return to try to get better, I…well…got A LOT better. Something about the relaxing vibe of the island, the contact with nature, the lack of stress seemed to work really well for me. I had almost no pain, and by the end of the trip I was no longer taking the Celebrex. That taught me right away that my emotional and/or mental state had a lot to do with my disorder. Then, a few good conversations with a fellow American, and a holistic nutritionist, taught me the natural foods I was eating on the diet could also be helping me. Another lightbulb went off as I realized I was having far fewer digestion problems on the island as well.
I returned from my vacation in Nicaragua to move across the country to a big city on the East Coast in June 2008. I was going to start a masters program, and I was going to start taking control of my health. I planned to do this through diet and lifestyle adaptations, or so I planned. The trouble is, there are a great many “healthy” recommendations out there, and very few that actually work for me in the management of my AS. So in an amusing summary, here is a list of the diets that I tried that did not work over the course of the following two years: vegetarian diet, vegan diet, raw food diet, blood type diet, alkaline diet, juicing diet, and the low starch diet. I also played around with some supplements, including colloidal silver, stinging nettle, saw palmetto, and cinnamon. The result was that for almost three years after my diagnosis, I never really felt like I had any control over my disorder.
In 2010, I decided to try out some medications. I was put on sulfasalazine. I had a rather atypical reaction to the drug and it stained all my body fluids yellow. The doctor said this was a possible side effect, and that it was harmless. The only problem was that I could no longer wear white shirts…that yellow stuff stains, no kidding. I toughed it out until after 6 months, the medication started giving me stomach aches and nausea. I was then offered to be put on methotrexate, but in all honesty, when I learned that a side effect was hair-loss, I decided I had had enough of “unusual” side effects for a while and I decided to return to holistic medicine for another try. (Basically…I was ok with yellow sweat, but hair-loss? Oh vanity…)
Thankfully, in 2010, I finally found a diet that reduced my symptoms. It was ultimately a version of the then newly popular “paleo diet”. I embraced a high fat, low carb, dairy free version of the diet and I felt better than I had in a long time. I joined a paleo club in the area and began a fascinating foray into the emerging field of evolutionary nutrition. Basically, if 99% of all past human generations ate a certain way, do you really want to be in the 1%? Through engagement with the “Ancestral Health Movement”, which includes other diets beyond paleo (e.g., Weston A. Price Diet), I discovered some fascinating science on the body and its needs. I’ve further moved to supplement my diet with Omega-3 supplementation, organ meats, and regular exposure to sunlight and nature. I also connected with many people who inspired me with their tales of curing or greatly improving their IBS, Crohn’s, epilepsy, diabetes 2, obesity, and other disorders with a “species-appropriate” diet.
The trouble with making improvements with auto-immune disorders is that you can get “greedy” pretty quick. With the paleo diet I dropped my daily pain levels from 7 to a 4. But after a couple months of this, I started asking for a 1. I discovered the limits to paleo. It would help me manage my AS, but not cure it. I began to wonder about taking a biologic drug. I had read a lot about them online and had heard some about them from my rheumatologist. I decided not to make a decision on taking the drug until I felt it was right.
Around this time, my post-grad school career was starting to take off. I was starting to travel a lot internationally, and the stresses of my work life were starting keep me in the office till late at night. My symptoms started getting worse. A year then whooshed by in a whirlwind of activity, and when I finally had some down time, I realized that that my physical pain was back to pre-diet levels. It was either that the diet was no longer working, or (as I eventually discovered) nutrition was not the only input into managing my AS disorder.
So, you can guess what happened next. I went to my rheumatologist and asked to be finally put on a biologic. My insurance eventually approved and I began twice-monthly shots of Humira. This was 2012.
My experience with Humira was really quite positive. It significantly reduced my symptoms, most effectively in combination with Celebrex and the Paleo diet. Of course, once again, I had found no “silver bullet”. When things were relatively quiet at the office, and I was taking my meds regularly, and eating well, I would still feel a few symptoms.
By the end of 2012, I settled into another period where I simply tried to just be happy with “good enough” in the management of my AS. I didn’t feel very much pain, but I felt so stiff, and it was common that I would tire out much sooner than my friends. Flares could still happen, so a return to the good old days of my physical vitality felt behind me. I was 30 years old, and I was trying to accept that there wasn’t any way around feeling like an old man. Ultimately, though, I just couldn’t accept it. I realized that deep down, I was and always will be a fighter a heart. I wanted more.
A swift kick in the butt came in the spring of 2013. A blood test caused my doctor to fear for my kidneys. In retrospect, strange readings could have well been a sign of my further diet tinkering, in particular the significant lowering of my body fat %. (An interesting experiment, but not all that conclusive.) I was taken off all my medications, and for the next two months, symptoms came back and I waited in great concern as to whether my kidneys were permanently damaged. Eventually, I was put back on my medications and simply told to drink a lot more water. The doctor really couldn’t explain what had happened. This experience was a bit rough, so I decided that maybe it was time to get “radical” in my treatment.
Around that time, a visit with a friend in Northern California re-introduced me to cannabis (the flowers of which are more familiarly known as “marijuana”). Frankly, trying the drug in a non-judgemental, non-stigmatized environment was incredibly helpful for me. Suddenly it didn’t feel like I was doing anything wrong. Suddenly it felt that maybe smoking a joint were not all that different - morally speaking - from smoking a cigarette or drinking a beer. The result was that I really enjoyed the experience. I had a lot of fun. And I noticed that the pain went away significantly while high, and was rather reduced for 1-3 days afterwards.
I began to wonder: What would happen with my AS if I smoked cannabis regularly? Eventually I decided it was an experiment worth trying. This experiment began around May 2013, and, well, it has been running ever since then. During this time I have consumed marijuana cannabinoids 1-3 times a week, on average, in either edible or marijuana vapor form (to protect lung health). The results? Staggering improvements in the quality of my life. And if you can believe it…I no longer take Celebrex or Humira Plus, I know I’m not done making improvements; the pace has only sped up in recent months.
Now, would I recommend it for you or anyone? Absolutely not. I am not a medical professional, and anecdote does not count as medical research. And furthermore, I have experienced real side effects. Though most of these I would call good, I cannot say what the experience will be for others.
But with that out of the way, I suspect you might be curious as to how exactly the the cannabis has helped me. I’ve done a lot of research, but at this point, all I or anyone else could possibly have is a theory. But theory I do have, so if you’re interested, I can present you my theory of AS and how cannabinoids interact with it.
(Alternatively, I’d recommend checking out NORML.org’s latest medical marijuana research summary on other auto-immune disorders, like Rheumatoid Arthritis and Multiple Sclerosis.)
My own theory of Ankylosing Spondylitis is that it is a biological mutation that connects your mental state with the immune system and, possibly, your digestive system, in a novel way. This connection is made possible by the presence of certain genes, typically among them HLA-B27, and perhaps activated during a time of great stress (as my own experience and many other anecdotes suggest). As a result, psychological stress results in your immune cells targeting certain tissues, among which include your tendons and ligaments. Scar tissue forms, and bone forms upon this, and may lead to fusion in the spine. Both inflammation and secondary trauma caused by the bone growth result in chronic pain. Similarly, if the digestive system is involved, then problems in digesting certain foods and bowel movements can develop.
That it is “psychological” stress that causes the primary mechanism of inflammation, and not physical stress, accords best with my experience. Of course, physical stress typically causes psychological stress, but that is not required. Physical stress would be anything related to the bodies efforts to put you back into homeostasis, and the main types of stress here - again, in my experience - are nutritional deficiencies/imbalances, poor sleep, lack of movement, and physical pain. Psychological stress, meanwhile, I would divide into six types: a lack of mental stimulation, anger/sadness, a lack of play, a lack of community/love, anxiety, and mental fatigue.
So here we have a rather holistic model. Cannabis enters into the picture when you look at how it acts upon the body and the brain. In other words, how it can reduce psychological and physical stress.
The body, well, this is pretty straight forward, or so we think. Some cannabinoids, CBD in particular, are now believed to be anti-inflammatory. Score 1 for marijuana as this, with respect to AS, can reduce overall pain, and in turn, reduce the overall psychological stress driving the disorder. Furthermore, if you have digestive problems, it has also been found that THC and possibly other cannabinoids act upon the digestive system - which has its own largely independent nervous system - to improve functioning. Score again.
Was this what I experienced with respect to my body? Yes and yes. The inflammation in my body went down, to the point that I stopped taking my Celebrex. And my digestion greatly improved, to the point that I had normal functioning and I could begin eating dairy and gluten from time to time, and even reincorporate the occasional sugary treat.
The brain, meanwhile, is where we must get a bit more speculative. As best as I have been able to research it, THC acts upon the brain in at least three pathways. First, it acts upon the brain by raising the frequency and divergence of your thoughts. So, thinking speeds up, and you get more seemingly random thoughts. This is what is called “divergent thinking”. Word association games, for example, become far easier for the “pot head”. Second, it heightens your sensory awareness, and part of this entails being able to alter your perception of pain. And third, it impairs other parts of the brain, particularly the parts that correspond to your time awareness. As I have seen it, this letting go of momentary worries can be euphoric or terrifying. (Whether it was due to my mind set or environment - or ‘set’ and ‘setting’ in drug research parlance - I was in the euphoric camp of the THC experience, so I was able to experiment with the drug.)
All of these alterations in the brain might help reduce psychological stress under the right circumstances. In my own experience, the euphoric creativity of the drug led me to greatly reduce the psychological stress in my life. This came through relearning the art of “play”, something many psychologists suggest for adults to do. The ideas I would come up with while under the influence ultimately led me to going on more fun adventures in my life, discovering yoga and dance, and getting out doors in nature more often. I also applied much greater imagination and fearlessness in my own life, I learned to have more fun at work, and I even took a chance and started a top PhD program to follow a passion.
The altered sensory perception also greatly reduced my perception of the pain, and even more importantly, it gave me a body awareness that ultimately allowed me to break up considerable scar tissue in my back through stretching and yoga. The scar tissue was mainly in my thoracic and cervical spine. As a result of this work, it no longer hurts to take a really deep inhalation, and even more spectacularly, during a three month hiatus before my PhD program, I took up the sport of freediving (aka ‘breath-held diving’). This experience, which ultimately took me down to 138 feet below the surface of the ocean, would never have been possible if I couldn’t have taken a deep inhalation, or allow my rib cage to flex with the ocean’s pressure. (In fact, I would never have though to try freediving but for the improvements I had made.) Beyond this, the altered sensory perception has also given me a much more heightened sensitivity to my nutritional needs and dislikes, leading me to even losing interest in caffeine and most alcohol (good red wine is the exception).
Finally, the loss of time awareness has opened me up to much more regular reflection in my life. Though I had previously undergone therapy to process a difficult childhood, the reflections while high have allowed me a much greater perspective to understand why things happened as they had. Another creative idea that came to me while under the influence was to write my own private memoir, a practice that had been suggested to me years before when I had been inaccurately diagnosed with depression.Writing this memoir over a period of six months had a profound effect. Though it was at times difficult, it gave me an incredible understanding of my life, of my faults and failures, strengths and weaknesses. And not to get too deep into it, it also gave me a way to really learn how to practice self-love.
Of course, the loss of time awareness also had its downfalls. I have certainly become more forgetful, but nothing that causes anything more than the occasional forgotten item. And in this, I’ve learned to adjust. In fact, it was through reading an originally anonymous essay by the late Dr. Carl Sagan that I got the very good advice to write down a clever idea whenever I had one.
So that’s my story, and one that is on-going. It’s been an exciting journey and I’ve learned a great deal. Much of my health today I have to credit with some traditional things like good diet and medications, but even more so I have to credit cannabis, and the lifestyle changes that it has led me to explore and adopt. Perhaps most incredibly, in my attempt at freediving, I stopped taking the Humira. And eventually, well, I realized that I now feel no different without it. In other words, with the exception of cannabis, I’m now entirely free of any anti-inflammatory or immune suppressant drug. I'd call that doing pretty good. |
