MS= making difficult choices and learning to lean on loved ones. There is no cure; there is no treatment that doesn't have horrible side effects. There is the love and support of my friends and family who don't define me by my disease but let me vent and discuss things when I need to talk.
The Wheelchair Kamikaze says MS = WMD.
A supermodel says: You never know the beauty of movement until you lose it.
And I really like this one (worth reading the whole story): It can be frightening simply knowing what others experience. Knowing what you might experience. Knowing what you have experienced and may again (or always). This knowledge is a type of anticipation which no patient or medical professional wants to burden you with, however “knowledge is power.”
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Medical marijuana is legal in 15 states; four of them tax the sale of medical marijuana. In Part 1 of this Dr. Oz Show featuring Montel Williams, Dr. Oz talks about the history of and debate around Medical Marijuana. Even if you aren't a Dr. Oz fan, he has great visuals to explain how things work. Montel's advocacy and legal troubles make my heart hurt for him. In Part 2, he says he is not asking for anything special--he has a right to be pain free. How can you argue with that?! Frankly, I think the drug companies want us to take artificial chemicals that are KILLING US, and are helping the government keep a natural pain remedy away from the American people who need it.
Who do you believe in this debate about medical Marijuana? I agree that it won't work for everyone, but no MS drug works for everyone (most have 33% efficacy, with efficacy rates increasing with the likelihood of a particular drug KILLING US.) I agree with Dr. Oz that marijuana is addictive, (WHO CARES that it is addictive when you have chronic pain for the REST of your life?) but he forgets that all of the pain medications being forced down Montel's and other MS patients throats are also addictive, and often do NOT work. See also: Why it's prescribed: Part 1 and Part 2.
In "Is it safe?" (or "Who should get it?"): Part 1, listen to the oncologist who has been prescribing it for 30 years as well as Montel's point at the very end about the lady who is against marijuana use, and in Part 2, her lame attempt at explaining away her conflict of interest. There's a different standard in the US under the FDA than in Canada, the UK, and Portugal? Part 2 also includes a list of "legal prescription drugs" used for pain, most of which are acknowledged as narcotics and highly addictive.
I am so tired of hearing that there has to be more research before proceeding. We know there has been a 200 year history of marijuana use for pain, and less than a 30 year history of prohibition, so why don't we do what is done with other big-pharma drugs--let it go to the market and see what happens? Keep in mind that many drugs are approved by the FDA for one purpose and then used for other purposes not approved by the FDA--they aren't even studied because there is no financial incentive at that point. I am not saying that I would use it if it was available. In fact, I don't think I COULD use it while I'm still working. But I think there is something not right with this debate.
Medical marijuana is legal in 15 states; four of them tax the sale of medical marijuana. In Part 1 of this Dr. Oz Show featuring Montel Williams, Dr. Oz talks about the history of and debate around Medical Marijuana. Even if you aren't a Dr. Oz fan, he has great visuals to explain how things work. Montel's advocacy and legal troubles make my heart hurt for him. In Part 2, he says he is not asking for anything special--he has a right to be pain free. How can you argue with that?! Frankly, I think the drug companies want us to take artificial chemicals that are KILLING US, and are helping the government keep a natural pain remedy away from the American people who need it.
Who do you believe in this debate about medical Marijuana? I agree that it won't work for everyone, but no MS drug works for everyone (most have 33% efficacy, with efficacy rates increasing with the likelihood of a particular drug KILLING US.) I agree with Dr. Oz that marijuana is addictive, (WHO CARES that it is addictive when you have chronic pain for the REST of your life?) but he forgets that all of the pain medications being forced down Montel's and other MS patients throats are also addictive, and often do NOT work. See also: Why it's prescribed: Part 1 and Part 2.
In "Is it safe?" (or "Who should get it?"): Part 1, listen to the oncologist who has been prescribing it for 30 years as well as Montel's point at the very end about the lady who is against marijuana use, and in Part 2, her lame attempt at explaining away her conflict of interest. There's a different standard in the US under the FDA than in Canada, the UK, and Portugal? Part 2 also includes a list of "legal prescription drugs" used for pain, most of which are acknowledged as narcotics and highly addictive.
I am so tired of hearing that there has to be more research before proceeding. We know there has been a 200 year history of marijuana use for pain, and less than a 30 year history of prohibition, so why don't we do what is done with other big-pharma drugs--let it go to the market and see what happens? Keep in mind that many drugs are approved by the FDA for one purpose and then used for other purposes not approved by the FDA--they aren't even studied because there is no financial incentive at that point. I am not saying that I would use it if it was available. In fact, I don't think I COULD use it while I'm still working. But I think there is something not right with this debate.
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There are some things "known" about MS, but many more that aren't. Here's a new insight into how MS develops (video, but the text below is the transcript of the video) that could lead to research in a different direction. I found this interesting because I somewhat agree with an opinion I ran across that stated, maybe there won't be a CURE for MS--it may be like a stroke, where prevention is more important than a cure. If that is true, a better understanding of the very early processes will give us better ways to prevent MS.
There are some things "known" about MS, but many more that aren't. Here's a new insight into how MS develops (video, but the text below is the transcript of the video) that could lead to research in a different direction. I found this interesting because I somewhat agree with an opinion I ran across that stated, maybe there won't be a CURE for MS--it may be like a stroke, where prevention is more important than a cure. If that is true, a better understanding of the very early processes will give us better ways to prevent MS.
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There were a LOT of links about MS and CCSVI. Here's an interesting snippet:
"many critics of Dr Zamboni’s CCSVI theory and treatment are involved in research studies relating to such drug related therapies for MS. What is also strange is that most research studies for Multiple Sclerosis seem to be concentrated towards slowing down and controlling the MS, making the disease more bearable, more manageable and the symptoms milder instead of preventing or curing it altogether. The very powerful pharmaceutical industry does business of over $8 billion per year, selling MS drugs that control the disease but not cure it."
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I saw this on Facebook:
*10 THINGS YOU (DO NOT) SAY TO SOMEONE WHO HAS MULTIPLE SCLEROSIS*
10. MUST BE NICE TO SLEEP ALL DAY
9. YOU'RE LUCKY YOU DON'T HAVE TO WORK
8. I CAN RELATE
7. JUST TAKE SOMETHING
6. JUST TRY HARDER
5. JUST BE POSITIVE
4. YOU JUST WANT ATTENTION
3. IT'S ALL IN YOUR HEAD
2. IT COULD BE WORSE
1. BUT YOU LOOK (GOOD)
I still work and don't get to sleep any more than usual most of the time, but I have heard #8 (really, you "know how I feel"? Unless you have MS, you know that I now know you are an idiot or insensitive or completely oblivious), #5 (um thanks for telling an eternal optimist to grin and bear it.), #2 (see also: eternal optimist. But, in all cases where I've been told this, I want to say (but don't by some miracle of the tact-god, it's worse than your shit, so shut the fuck up), and #1 (of course I do! haha).
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I just paid $284 for MY portion of the cost of my Provigil (no generic available) and then, after getting home, realized it wasn't even the 90 count I had before--it was 15 (insert many, many bad words here) pills. I need to do some homework to find out if I can get a larger number and/or get a discount by ordering online. I didn't have anything else to do.... Like reading this about the rising price of disease modifying drugs. I guess the good news is that this unbelievable price gouging of the MS community pushes more of us into drug trials, even if we really don't want to be guinea pigs.
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In the Age of Endarkment, the author states:
It takes strength to be ill, the ancient Chinese used to say. The more love, compassion, wisdom and calm you store up, the more capable you’ll be of facing up to hatred, disappointment, envy, fear and disturbance.
I'll say it takes strength to be ill! I believe that MS fatigue is at least partially caused by the underlying pain our bodies are in all the time. When I have a really bad pain day, I'm just wiped out mentally as well as physically.
I just paid $284 for MY portion of the cost of my Provigil (no generic available) and then, after getting home, realized it wasn't even the 90 count I had before--it was 15 (insert many, many bad words here) pills. I need to do some homework to find out if I can get a larger number and/or get a discount by ordering online. I didn't have anything else to do.... Like reading this about the rising price of disease modifying drugs. I guess the good news is that this unbelievable price gouging of the MS community pushes more of us into drug trials, even if we really don't want to be guinea pigs.
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In the Age of Endarkment, the author states:
It takes strength to be ill, the ancient Chinese used to say. The more love, compassion, wisdom and calm you store up, the more capable you’ll be of facing up to hatred, disappointment, envy, fear and disturbance.
I'll say it takes strength to be ill! I believe that MS fatigue is at least partially caused by the underlying pain our bodies are in all the time. When I have a really bad pain day, I'm just wiped out mentally as well as physically.
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Don't I have too much to do to do nothing?
...make it a point to "do nothing" for just one day in your life, once a month at least. Sit silent in a room, or outside, under a tree, and be very quiet. Very languid. Feel free to be lazy. Without guilt touching you, even with a barge pole. Roll on the grass; or stretch out, let the morning sun kiss your eyelids as you slip into nothingness. Or just watch the squirrels run up the tree trunk, awe-struck like a child of four. "Stand and stare" is not a cliché. It is awe aerobics for the soul.
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